Fibromyalgia Symptoms: Not Just Pain-Shocking List Will Surprise 

The most frustrating thing for me is the variety of symptoms I experience in one day-waking up, having a plan and not knowing how my day start or if I’ll get anything done, or even out of bed. 😢 Lately, nausea, vertigo, and fibro fog have presented a lot of challenges. Why am I nauseous…oh, it’s just my fibro. (Like you said to be cautious of) I enjoyed your video. Thank you!

This is tough since I have many that are on the list. The Chronic IBS affects my daily life, as well as the difficulty sleeping and difficulty concentrating . It was difficult having doctors dismiss me for years, passing me along to others as they couldn’t figure out what was wrong with me. It just contributed to any anxiety that already existed . The countless MRIs, spinal injections and physical therapy have been both exhausting and expensive, as in some cases they weren’t covered by insurance.

I hate when I bend over and I get shooting pains in my back and getting to the loo by the time I get there I'm so out of breath I feel dizzy

Insomnia. And fatigue. They strike badly unexpectedly. Last night, I had no tea, coffee or other stimulants during the day. I took 2 trepilene, 2 L theanine, a Gabapentim and a Phenergan, hoping to catch up some sleep. At 2 am, I took 2 Valium and 2 Allergex and eventually fell asleep about 3am. I was awake at 6, but too tired to get up. I then unfortunately had to have coffee to get through the day. The other day, because I could not be groggy the next day, I only took a melatonin and a trepilene. I barely slept, then was so fatigued the next day I couldn't function anyway. But if you look at me, I look very healthy for 60, my hubby is the same age and most people think he is much older than me. It is very frustrating, a phantom condition. I used to love swimming and the sea, now I have to force myself to bath or shower. My temperature control is ridiculous, I can have sweat streaming down a side of me facing the sun, and goosepimples on the side facing away. Everything about this condition annoys my husband, from not being able to tolerate the sun (i travel in the car with a reflective shield over me) to not having the energy for things when I'm feeling like I've slammed into a brick wall. He thinks I'm depressed when I can't get up or lie down during the day. The pain and inflammation I've got fairly well controlled, and have been able to mostly drop the Tramadol and Arcoxia with a mainly whole food plant based diet. I've developed a strange new symptom lately - occasionally, I will feel as though I've taken methamphetamine, or 10 double espressos, its as if my blood is racing and I talk and move fast, can get through my chores quickly, but can't sit calmly or focus, I'm wondering if its perhaps panic attacks? I keep on forgetting to see what my heart rate is doing. Tonight I'm trying 2 Brazapam and an Ativan, I had a decaf coffee today, wish me luck!

One question I have is about gait. I always had a very graceful gait (I'd done dance training when I was younger and was also a runner), but in recent years I have observed myself on home security footage and now my gait is more of a waddle/lumbering gait even though I am a normal weight and quite active. Does this indicate fibromyalgia? Do you know anything that could help improve my gait? Could I also have these gait problems from CFS (rather than fibro)? My most frustrating symptoms are malaise, bloating, brain fog, and poor aerobic conditioning. I am also frustrated because I live an extremely healthy lifestyle but am still less healthy than I would like to be. I have always put effort into eating a lot of fruits and vegetables, exercise, sauna, etc. ANYTHING for good health I have put the effort in. So it's frustrating to not feel anything close to 100%.

Oh yes...

Yes, yes yes, especially from my horrible mother in law.

Another favourite ‘well, you were ok yesterday’

How about “maybe you’re just lazy”

@@lorannamoody7011 nobody has ever said this to me except myself. I feel like I'm lazy and my husband has to reassure me that I'm not.

Me too ,just taking a shower is sometimes a chore 😢

It really depends, for exemple for me it’s the pain cause it’s so bad that I often collapse even in the middle of the street due to the pain, no one experience the same symptoms and with the same intensity

That IS a successful day!!! I hear you!!

I was the same way till I started taking lyrica and it changed my life. I feel amazing n myself again of course with limitations n such still but I have less pain, mind blowing improvement in fatigue and fibro fog.

same here! i am using hemp oil which seems to help..

Thank you i really enjoy your energy and enthusiasm. Some people however have different complicated issues like arthritis in your spine and feet. Its horrific. But i do understand your message and it does give hope. ✌🙏💗

I totally agree. You figure out a way to live with it. Moving is the secret weapon we all can use. I have dealt with this for over twenty years and had to figure this out myself because sadly there is no magic pill for this

@danuta very easy how some people say get up get going. Maybe her symptoms isn't as bad as yours. I was the most energetic person u could think of. The very people who told me that...asked where I got all that energy. Are the people that can't understand. Would I fake my pain and acne...really. after being one of the strongest woman known. I could pic any one up in one arm. At the age of 48 it just changed. I got pre-menopause but I think it's mixed with fibromyolgia. I get so much pain it has been since I was 48....I am now 55. Gotten worse. Everyone calling me an addict trying every pain killer I can find. Every week I got a new symptom. Just wen I am getting over one thing. Something else happens. This kinda makes sense wat I have. My friend suffers terribly with shingles her bones have twisted. Her shoulders gone forward. She must weigh 42kg. The pain this woman goes through. She drinks Hrt. Because if she leaves it.. she can't even move.

Have been living w fibromyalgia for about 30 years. I have pain , fatigue, stiffness and tingling all over my back arms legs. I combat this by swimming and taking strength and balance training classes. You have to keep moving. Fibromyalgia is worst when you don’t move. Be brave. Fight it.

Thank you for your lifting up... Hugs ☺️

my answer always is a smile and "fine thankyou"... no one really cares and doesn't want to hear. You have to smile and bear it. I have had it for 35 years from lymne disease. But divert the mind with music and beauty around you. Cold pool at the Y keeps me going. Helps pain and brain fog.

You need a new family

Hugs Hugs. This is my family as well. My husband thought it would be a good idea to get 3 more German Shepherds. Now I find myself apologizing to the dogs because I cannot care and play with them as they need😶. Can't even care for myself properly. Have to take a break and lay down after a shower.

They are supposed to, but most people are so self-absorbed that they can't find real compassion for anyone else. Most people dont have tv families, when it comes to their own family they are awful.

Other people's pain doesn't negate your pain or mine.

I'm a night shift nurse as well, with FMS about 25 yrs. Been a nurse nearly 30 yrs now and it's getting harder and harder to function. Fibro ain't for sissies!! This is no joke, like u said.

I know how you feel! So hard and painful 😖 I was a very active Gymnast and made it almost to the top when I got so much pain in my legs that I could (sadly still) barley walk (2017). I was diagnosed with fibromyalgia 14 (2018). I just have gotten worse... but I believe that there is light in the end of the tunnel!! Next week I am going to the hospital to help my pain go less! God bless you all!! Love from Iceland 🇮🇸

Try vitamin B12 injections. They worked somewhat for me but after 2nd dose I reacted and can't have them anymore. There has been some longterm relief. B12 is now common usage for Fibromyalgia.

Crazy Kansan I hear you and feel the same 🙏

So you being a nurse, have you tried nerve meds for your fibro symptoms? It is a central nervous system disorder.🤷

Exactly! The chronic fatigue alone is so disheartening, then layer on the pain, and life has lost it’s joy!

Thank you sweetie 😊and prayers for some relief to you .🙏

I understand ❤ the only thing that gets me through each day is Jesus. If it weren’t for Him, idk what I’d do. Life is very bitter, but He makes it sweet, too. Prayers 🙏 ❤

Totally agree. I work and come home exhausted. Sometimes, it is all I can do. I get so tired of it.

Thank you, Fibromyalgia sufferer.

Same

Also I don't know about others but it got sooo much worse after having covid in 2020.

​@@jenniferg7713 It might have also gotten worse without covid. People's health tends to get worse, especially with stress.

I have developed Tinnitus (Ringing in the ears) do you think Fibro has caused this??? Been looking for answers and I'm glad I saw this comment. I blamed side effects of medication for Tinnitus and blame myself for feeling tired, exhausted, irritable all the time. It's hard to accept my health issues and I blame myself and say it must have been something I did... But I have been praying to God for wisdom and understanding and God knows all and he is my great physician. 🙏 Prayers for all who suffer

Same here

I feel you, boy do I feel you

The same . But meditation pray retreat helpe Me alot . Doing sipirtuell jeurny Hopono prayer . Stress relief musik . Join som healer Thierry Manny ön RU-vid. Dont gives upp mat be it is a messege to us to finns happenes in a differens way. I realy Chang event if take time . I Hoppe you pease and love

Very lonely : (

I’m sorry to hear that. I know how you feel. I think I’ve had fibromyalgia for years, and I know it has changed me, I just never put all the separate symptoms together and I’m a Nurse Practitioner! It’s been really hard because all the symptoms are so different on spectrums. I feel that the fatigue is the worst. Nobody understands in my family and friends and they think it’s all mental.

Yes I can completely understand. I'm not yet diagnosed, 30 years now, cervical spondylitis, spinal stenosis, and every Fibromyalgia indicator, skin sensitivity pain, all forms of. Bowel, bladder, co- ordination, loss of strength, extreme exhaustion, poor and disturbed sleep the list is endless. However, try to push for help, and have faith. X

I’ve heard that too ...have to bite my tongue not to say , you don’t look like an insensitive idiot

So true!! And people not believing that hugs hurt!

I know right?

I always respond with "and you don't look stupid... aren't looks deceiving?"

Or "You can’t hurt THAT bad!" Or the pharmacy looks at you like a drug addict and make you feel "guilty" for being on opiates!!

It's ignorance more then malice - but tough to deal with for sure - I think most of us feel like you do at some point during our journey - you hear people talk about that all the time in the recovery interviews: cfsunravelled.com/cfs-fibro-recovery-stories/

Same here, my own sister doesn't believe me, ...I quite frankly became tired of explaining my simptomes, nobody hears my crying for help 😒

Your not alone.

♥️&🙏 I know :)

I didn't know sweating could be a symptom of fibro! I sweat profusely and am years from menopause and noone can explain my sweating. I have poor sleep, joint pain, and sciatica. I am wondering if I have it or something similar?

EXACTLY SAME- situation…severity.. symptoms.. sciatica & sadness of ALL of this. May you, all of us find much healing and more comfort in each other’s knowledge and empathy. ❤️‍🩹☮️✨

Same here and I'm only 34 years old. I feel like I'm 90. It's ridiculous. I just want energy and to be able to do fun things.

My mother also has degenerative disc disease and fibro. She struggled all our lives to give us the best life she could manage, and now that I'm also developing symptoms on top of being autistic, I see now how hard the struggle to maintain some semblance of a normal life really is. You should be proud of yourself for making it this far despite it all.

I would love to analyze your blood work and diet!

@@chacha3209 You must not be a physician.

You are me.. I've been diagnosed for 15 years.. the shower thing, on the nose.. my depression is so out of control because my fatigue is so awful, I'm not living, I'm barely existing ya know... it's awful.

Same here 😢

​@Mandy Wathen you are not alone. I also experience these symptoms among others. It's devastating at times. God bless you💛

Me too Tracy😞

You aren’t alone ❤

@@connieturvey3952 me 3 Connie 😞

Unfortunately, you aren't!

Oh yes...they say agoraphobia, I say I'm hibernating. 😏 but seriously, it's a vicious combination. 🌹

Good on you Steve. Look, partners sometimes get a beating, but how are you supposed to understand something you have never experienced. I think partners are the forgotten victims of this illness. We spoke about this in our first podcast from memory ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-NDM20rBz5og.html Here is an article written by a husband that might resonate with you : cfsunravelled.com/how-recovery-from-mecfs-and-pots-was-enabled-by-psychotherapy-for-the-family/

Good on you for sticking by her regardless. I wish my husband did.

Fibromyalgia is horrific I’ve now endured it for 15 years, it started after many years of abuse and stress which ultimately led to a nervous breakdown. I’ve never recovered I’m not 30% the person I was. 5 yrs ago I went through breast cancer having Chemotherapy and radiotherapy which I would say to a non fibro person would be horrific but I coped with that better than I cope with the Fibromyalgia hopefully that will help put into perspective how bad this condition can be for some. I suffered more during the treatment as the problems that Fibro causes were exacerbated by the treatments. I wish I could wake up one day and all the pain & other problems it causes would disappear. 😢 Even the slightest touch can be so painful as it feels like the skin is raw from a burn. Please be loving & understanding with your wife as it’s a living hell.

I'm with you also we suffer so much

@@ellenharvey5371 Yes!!! We really do suffer, i've had this over 25yrs. I used to be an "on the go" person, Fibromyalgia has made me feel lazy and worthless. I have wanted to go to "sleep" and "not wake up" too many times.

I want to die too. Every day that's all I think about. This year I missed my Mother-In-Laws 93 birthday, our family vacation (I stayed home alone), Thanksgiving, my husband's birthday dinner and Christmas. I can hardly fully shower anymore, it's too painful and exhausting. I only leave my home for doctor appointments. None of my friends ask me to do things anymore because I've canceled plans so many times or I'm late or they're afraid I'll have a seizure (I'm also Epileptic). Yep, I'm done with this shit. Absolutely finished w/ no shame. I'm 56.

Nice information

I am so with you! I’ll meet you at home one day!

I know exactly how that is. But try explaining that to people. It is very real, and it has changed my life forever. 🤗 Sending you a hug.

How did you get a diagnosis. I have symptoms but whenever I mention it to my dr the Pooh Pooh it. My legs won’t work like they used to sometimes I feel like they won’t lift up as I stumble. I get stabbing and burning pain in mostly my right leg but do suffer flare ups of sciatica. Sleep is crap. Wake up exhausted. Brain fog and loose track of conversations. I suffer high anxiety and depression and take meds for those. But they don’t feel enough.

Me too

@@pennylane5404 I was eventually referred to a rheumatologist. It took many appointments with several specialists to get a diagnosis. It was amazing that finally I was able to get the right meds to take the edge off. Like many people who have fms I struggle with many daily activities, just vacuuming 1 room can wipe me out. On days when I can't do housework I remind myself of a saying my mum used to tell me "the housework will still be there tomorrow, you may not". I know it sounds a bit defeatist but it's more about me giving myself permission to leave things alone and not feeling like I'm "giving in" to the fms. I've invested in a tens machine as an addition to my meds, feels like it's helping a bit but it may just be psychological, only time will tell. I'm not sure where you live but if your doctor won't refer you then I'd ask to meet with the practice manager or change doctors. I'm eternally grateful that I have an excellent doctor who can pick up on changes either in person or in a phone consult. I wish you all the luck with your medical journey and I hope that you can reach a diagnosis and get treatment soon x

@@pennylane5404 Get blood work ran for Epstein-Barr Virus, cytomegalovirus, echovirus, go on a yeast free diet (helps with fatigue, pain & fibro fog)✌❤🌏

Funny how we all seem to suffer differently. I cannot have weight on me so I use the electric blanket instead. Love to your sister from a fellow sufferer and thank you for being there for her.

I'm glad that worked for them. Gluten free didn't help and a weighted blanket would cause me more pain.

I've most of the symtoms that's horrible.the most that bothers me is my skin feels like it's on fire n in the shower the water feels like shattered glass hitting me.I pray some day they find a cure or something to relieve the deliberate pain.thank you for this video

That’s sweet, thank you! ❤

Unless a person has fibromyalgia they have no idea what we go through. 😢

Prayers you mention, for 2 years I pray for my pains from fibromyalgia that kept me moving or not the pain was there. One night praying por healing a Bright light in my head sparkle, all my body move like in a shake for I was in bed. Immediately all the pain was gone 🙌 . This was 10 years ago and since then no pain!! In my understanding is the nervous system. Because it was like a clear rest brain was again functioning.🙌

🙏

Bless you I know what you are going through I was a child when I first knew something was up

moondancer2go yeah me to

Doctors are dummer than we are!My old doctor has retired but the new one doesn't seem to know what fibromyalgia is!He gives me medecine and shows me the door and I don't feel that he understands.So I make sure the prescriptions are for a twelve month period and I go see him once a year!

@@zeldagliches96 Me too!

Good luck. It is very difficult.

Me too...I feel alone...😑 I can see that my doctor doesn't know what to do... He just wants me to take the my tablets...as he thinks most of the pain is on my head....

exactly

Yup. If you dare have fun it’s bed for you for a week or more.

I'm in pain as I type this to you. We're all in this together. Stay strong and healthy hun!

Fun times ahead for me then 😖

I totally understand. My brain fog is really bad and frustrating, I have to speak really slowly to get the sentence out. The really bad part is that there are several times I have blank spots, meaning that I lose the word and image I am trying to say, and then boom it pops up. I have to say other words to get to the point. It makes me so angry and frustrated.

Good analogy....Wack-A-Mole just about sums it up

Hhh that's it.

That's true!

Best explanation I have ever read!!

I actually giggled at your analogy. I appreciate the smile you gave me during a major flare up ☺️

I agree it’s a lonely disease as no one gets it.

Me too.

This has to be one of the saddest comments I've ever seen on RU-vid. I'm so sorry its been so hard for you. I juat found out I have fibromyalgia recently coupled with MTHFR gene. Still learning about everything, thought the way I felt was just normal for who knows how long. I thought it was just a part of getting older and im 31 haha

Jutta Hollar I am so with you, dear! My house!! My bedroom ....is just unbelievable!! I cannot put clothes away. .... everything is everywhere and I barely have a path to get to my bed!! I know that sounds just terrible! It IS TERRIBLE! Makes you not really even care to get up in the morning I can tell you that much. I sleep a lot!

Nan Branham Me too!! I used to put everything away but for the past 2 years just throw my clothes on my ottoman. Dig thru it for clothes that have now fallen to the floor where they're staying. Don't even care anymore.

I'm with you but I push myself to keep going

I'm the same it's no joke

I agree with you. When I tell people that I can't make plan for tomorrow I don't think they understand. It's stressful when you make plan and on the day you have to call to cancel because you can't make it. You become isolated because you are not able to social. You go to bed so exhausted and feeling sleepy but when you get in the bed you stay a wake until 5am with headache and when fall asleep you it's hard to wake up or have light sleeper where little noise wakes you up and you don't go back to sleep

Same!

You could've diagnosed yourself if you were your own Doctor like I've been promoting for 40 years and guess what 50 years ago Janet Travell left humanity precise 34 part recipe daily behaviors restorative therapies you must do yourself when obeyed guarantee to eradicate all the hundred and 22 signs and symptoms of PTSD cured with megadoses of TLCs works perfectly miraculously precisely helping mother nature do her best while you get good nights of sleep wake up refreshed pain free mental clarity battle ready.

Same here

Yes, same.

I went to a rheumatologist and he told me I had fibromyalgia after he did a few things. He’s a well known doctor too in Washington state

I can relate to the bruising. My whole body, it is one symptom, some people are having serious adverse reactions from the vax for covid..dr peter McCullough has good treatment for that..

For a while now I feel like I've been beaten up or run over so your bruised all over description I think is a good way of describing it.

You have same complaint my daughter has. She had covid several times, ,,,the first lasted 4 months. Shes 43, and I havent hugged her because touching her is too painful.

God bless you.

How did you do it? Please if you can let me know. I'm turning 59 and can't comprehend how I am going to be able to live with this until I am 83. I don't know if I can cope. Any advise from you would be helpful.

Praying for you 🙏

​@@timh5168just moment by moment. Day by day. Sometimes you hurt so much, cry, try to sleep. Feel like your dieing any minute. Then other days it seems to lesson just enough that you can hear the birds sing and feel the warm morning sun on your skin. They are short lived but just a little moment like that, gives you just enough hope that you will experience that one more time.

Has your doctor prescribed steroids yet. They are a miracle for the relief of the worst symptoms.

and maybe take it more seriously and school themselves about it.

I'm a doctor with fibromyalgia. None of my colleagues take it seriously.

Amen!

I wish that every time I see my Dr. I'd like to see how much he believes "it's all in his head" if he had to live it for an hour.

Ima quigmire I always say I wish who ever says that to me could live in my body for a day on a good day, then let them try it out for a day on a bad day.

Can't think under stress. My mind is confused and I don't remember things. I was forgetting to put soap in washing machine for months when I first got diagnosed. Funny I was remembering fabric softener. Couldn't figure out why clothes weren't getting clean then one day I caught myself

I feel the same. Fatigue, brain fog, unable to relax, feel tired, joint pain, swelling of my body, hands and feet. If I sit too long I can hardly get on my feet from the pain in my legs and lower back. My neck is sore and shoulders as well. I react to foods. Sometimes I feel that I'm being pricked with needles in my feet and other parts. Or stabbed on my back. The inside organs are affected as well. I can never stay still because I feel itchy, tickled everywhere. Sensitive even to fabric rubbing my body. Loud noises bother me and more. However, I say to the Lord "all for your glory, for you my Jesus" because He suffered more than I could ever in this life. My friend I feel for you. May the Lord strengthen you and give you great faith to withstand any sufferings. Life is short compared to eternity.🙏

That and having to pee all the damn time😶

Minister pain and not sleeping

Trying to explain this to people is so difficult

This is a bad choice of words for a neurological condition. Here is an article that addresses this cfsunravelled.com/is-fibromyalgia-real/

Thank you Dear

♥️🙏😩 thank you

Thanks it means a lot.

Thank you!

Thank you for your compassion

Same 😖

I'm 66 I've been dealing with this for years. It's been years of this. Three years ago I lost my insurance and doctors. Almost a year ago and 3yr.in bed I left my husband and got my own place and insurance I thought maybe I could get back on track. But I can't find a doctor that gives a shit or I get remarks like fibromyalgia is a thing. I'm lazy and lay around like a Buda. 😨😨😨😨 I'm about ready to give up. I'm can't call this living day after day.

I've been in the "given up" category since 2015. Diagnosed in 2004.

I've started losing my balance more frequently and am so scared of falling in public I try not to go out if I I'm feeling bad. Some days I can barely walk when a flare is full on.

I have the same. Arthritis on my spine, knees and serious bursitis and degenerative disk disease and degenerative joint disease. That with fibromyalgia is almost to much to bare some days.

My wife is the same. She has all of what you just described!

All of what you said and more. Feels like a neverending punishment.

BE WELL GODBLESS YOU TOO✝️✝️✝️✝️✝️

I totally understand, I also get tired of hearing go out and get some exercise you'll sleep better and feel ,😖😖😖😖

I know that I don't know you. But I can feel your pain I have fibromyalgia too. I wish I could be normal like everyone else too. I have to get off my pain medication before

I know that I don't know you. But I can feel your pain I have fibromyalgia too. I wish I could be normal like everyone else too. I have to get off my pain medication before

Me, too! The itching is unbearable. 18 years.

I had no idea I was not the only person with this itching that seems to be more noticeable as I crawl into bed at night. I just thought it was the soap I was using or from dry skin. As a sufferer of fibromyalgia for many years, it impacted my ability to work effectively as a Medical Lab Technologist. The noise, stress of working, the body pain, and as I've come to realize, the lighting in the Lab became unbearable, and I had leave my job and go on disability. I always hesitate to disclose my fibro diagnosis to medical staff, as I am always unsure of what their beliefs are when it comes to Fibro. But, we soldier on.

@@adalovelace7806 i have a lot of itching too but it could be my liver.......i would love to have 8 hours straight sleep!

Nightshade vegetables are bad for me. For pain Epson salt baths help with whole body pain at least for a bit of time. Online MOOD sleepy time gummies help my muscles relax enough to sleep. It’s been 30 years ,thank god my husband made enough money so I didn’t have to work. I don’t know how people with fibro do

How do you do this??

Very long hot baths after Tylenol. It helps a lot ! Like 45 minutes, keep adding warm water to the tub. Listen to music, or a candle, or I use podcasts that r timed for about 45 minutes. Try it.

I feel for you it's such a overwhelming condition to live with..CBD oil is so good for the pain. I was prescriped many pain killers..which I won't take I replaced them with cannabis oil..my pain levels and symptoms have changed remarkably.. I have abit of a life now... blessing from me to you.. keep strong...

@@madambutterfly4352 do u experience nausea ingesting cbd oil?

It's a chore to stand and shower! I'm so depressed...I hate being unproductive. I don't know what to do. My daughter is only 5

Me too, I am so sorry 💜 I want my MOM ❣

@@ShaniTheBurningTree I'm so sorry😔

If you don't mind me asking, what kind of cancer did you have and what were your symptoms? I think I'm going to be pushed into the fibro corner soon but don't think that's whats happening.

YES!!!

I'm so sorry you went through that. :( You are absolutely correct.

I agree with you on that comment. For years, I had 99% of the Neurologists play both sides of the fence re my severe Epilepsy growing up. I started taking seizures as young as 3 months old & instead of taking responsibility for what they did, they always blamed my parents. They said it was genetic in my family & that I inherited it from my Dad & thats when Id snap back at someone & say yes. Its so genetic in my family, thats why my younger brother, Dads older sister or nephew doesnt have it. My Dad neither. But, they never minded making you have to go from Timmins area all the way down south to as far as London Ont. just to talk to you for 2 mintues say & then change or add more to your meds list & then say. Ok. Come back next week, etc... Wow. They would try & brush me off & say I didnt ahve that, yet, they sure as hell didnt mind drugging the shit out of me though growing up. 750mg daily of Depekane, 300mg daily of Dilantin & 1 or 2 other drugs. Yet, I was 11 years old & drugged like that. They knew their drugs werent working work shit, yet, theyd still dope me up daily. Instead of treating my severe hypothyroidism & pituitary tumor, etc... they ignored those & continued to try this drug & try that drug to no avail. Then came my grace period, finally. I went to University Hospital in London Ont & saw Dr Warren Thomas Blume (the Head Neurologist there) & his work partner, Dr John P. Girvin (the Head NeuroSurgeon there) & Dr Blume ordered an EEG of his own & the ordered an MRI of his own for me too. After his tests, it showed that my right temporal lobe was crushed at birth & that nearly 3 quarters of my brain had severe scar tissue. He said, its a good thing that you got here when you did, cause any later than today wouldve been too late for you. He said, that the scar tissue was all throughout the right side & covering almost half of the left areas & that the left side is more problematic than the right is. He then told me that the reason I had Epilepsy all my life wasnt a genetic issue at all. He said, you were a forcep delivered child, werent you. I said, yes. He said, I hope you realize that that is what caused your Epilepsy, period. No genetic issue here, he said. Only a drs malpractice, he said. He told me that part of my healing process was to let anyone who ever insulted me, degraded me, etc... throoghout life, to let them have it he said. You need that & deserve that too, he said. So I have done just that ever since that moment. I defend myself ever more than I already did throughtout life & dont give a shit what anyone thinks of it either. Because, I dont think its right to have a dr say that oh, because you have an older half sister with special needs it must be something in the water, in other words. Bad genes. No, just a stroke of bad luck & there is no explanatin for it, either. It is what it is & thats that. You have to live with it like it or not. There are lots of special needs people out there & just because they arent up to another ones so-called lever of satisfaction doesnt mean that that person needs to change or needs any adjustments. If anything its the ones who judge that need a serious change & to have some serious adjustments done. To their attitudes, ways, etc.... We are who we are & I was so glad to have their brain surgery with no hesitation for a second & thats because, I always knew what the truth was & knew that God would deliver that truth to everyone else in ways that they cant ever explain & I was lucky to be chosen to be a part of him showing what he can & will do for those that believe & never bend. I didnt & I got to know what life was without 20+ years worth of having my whole weekend be a blur due to having too many seizures to even remember my weekends, etc... Its nice. We patients are the teachers of what this is or that. I usually knew what was wrong with me even before anyone else did & thats why my favorite saying became, now I know why I was born with the dream of wanting to be a Neurologist when I grew up. Maybe I never got to, but, I knew that I couldve easily been a dr knowing that Ive had many different issues, etc... For eg. Eventhough I never had Liver Problems before. I knew in my 20s that I was starting to have signs of Fatty Liver Disease eventhough I was never a drinker, smoker or any kind, etc... I was quiet with my actions always. Yet, my liver was starting to fail. I got checked & was right & was right about many other health issues too throughout life. My favorite saying when it comes to drs is, Theyre not Jesus Christ you know. They dont know shit & only know what they know because they have us patients (their guinea pigs) to practice on. Dont be fooled by the white coat any. Theyre only allowed to wear that white coat because they luckily passed the test & got enough practice on us guinea pigs to earn the right to treat us. They are people just like us so dont go looking at them as Jesus Christ because they are not. Thats why we have to be our own drs too you know. We need to educate ourselves about ever topic imagineable & to pay attention to our bodies, etc... & then. Only then, will sparks fly of the right kind & in the right order & in the right direction too. Just like my 2+ decades worth of my battles with them re my Epilepsy, etc... I knew in my heart what the right answer was & God always lets us know too.

first, I am so sorry for your experience and my own has shown that is likely not uncommon in the least, though terrifying. My thoughts to you and you recovery. But...Yes, Yes, Yes! I have been gaslit and dismissed more by medical"care" staff (from specialists on down the line) than any "layman" has ever displayed to the chronic conditions I suffer from. It is has been horrifying the way my symptoms are disregarded and untreated and my symptoms ignored. For instance I have had night sweats for over a year with swollen lymph nodes, I ask, "is this the autoimmune conditions? Is this the fibro?". They order a blood test, it's normal, so I get no answer, no follow up and complete dismissal of these symptoms which I keep bringing up. I am going so far as to move in hopes of seeking better care, this is killing me. I feel completely alone and really uneducated, my husband and I are trying to learn as much as we can on our own, it's been a crash course of "omg, that's why that has been happening!, thanks doc".

I've had this for yes and would like to know if there are any new pain medications out there or are they treating this disease differently now with out the pain meds?

I found that menopause does aggravate it. I used to feel like that like growing pains at the back of My legs. My wrists u can't touch them like b4. It first started in my fingers. And escalated.

Vicki C by watching what you eat do you mean you are on a certain diet? I have heard good things about paleo and about fosmaps- I think both of them are elimination diets that you reintroduce foods, find what’s bad for you and tailor the diet to your body.

@@abbzeh137 yes cutout all sugars carbs only eat 2 to 8 ounces of meat. High veggie diet. It really helps

Can you recommend any support groups?

Ty n I'm right there with you

@@janetscofield7740 of you are on FB at all I suggest typing it in and start joining groups. You'll find what groups work for you or not. If your looking for a group in your city. I suggest looking at fibromyalgia groups in your city that your from. I'm not on FB anymore otherwise I could give you a list of names of groups

rita Daniel I can relate to you Rita. I got very hurt when my GP called me “crazy” I felt depressed at that point not before but he has already put me on ante depression meds which I felt was not needed at all. Mine is a big story, no time to go on about it. But please know you are not alone in this horrible journey.

Tamil Ruzaika I am on Cymbalta, which is an depressant, but also prescribed for fibromyalgia pain.

I live in Northern Illinois. I had a hip replacement back in 2007 and it went bad, would go out on me while I was walking, etc.! after 11 months. I went in to my doctor. He took x-rays. He said the hip was “perfect” and that I was there “looking for drugs“. A doctor at the University of Iowa did my revision surgery on that hip. The ball joint had been loose, which does not show up on x-rays!! It was a 2 1/2 hour drive for us, but so well worth it! They treat you there like you’re human!!!

I was accused of displaying "attention - seeking behaviors", and my GP screamed at me that he "believed I was sick.. SICK IN THE HEAD!!!" And I gave him an earful before storming out of his office. Now, I'm truly afraid to go to the doctor.

It so sad 😞 that people treat us this way and I truly understand how you feel 🤦‍♀️😢I’m so sorry

I totally agree with you & am glad that you have someone who is the same with you, like my Grandpa was with my Grandma. I remember that old biblical saying, when they say that the moment you people get married, they go from being 2 separate bodies to being 1 body. They are a whole. And my Grandparents were that. While her physical health slowly deteriroated due to having diabetes type 1.5 (which means that she had equal symptoms of both types 1 & 2), arthritis, hypothyroidism, a heart pacer, & on & on. And he had Angina, Alzheimers, etc... & even with his mental helath deteriorating alongside her physical health. My Grandpa would push my Grandma around in her wheel chair for miles & miles a day. Up & down hills, around the sharpest of corners, etc... He was too stubborn to give up & wanted to bring his wife sightseeing anyways. Thats when you say, Aint Love Grand. In the nice way that is. Not the sarcastic way it gets used for most times. :) I am glad for you & wish you both all the best. Take care. :)

You have a very sensitive husband with your illness. Mine not so. Doesn't believe I have that problem. Calls me names and requires me to do more when so tired. I now have diabetes also with heart problem High blood pressure thyroid and more. Oh well. I'm sure many of us have problems and illness.

@@pjmjdmurdach4792 I’m hypothyroid, I have fibromyalgia and IBS, but my symptoms have diminished over time. Stay away from white bread and sugar they are your worst enemy…alcohol doesn’t help either. I’ve been diagnosed with IC also…I think it’s worse than fibro. So now I can’t have any caffeine, or sodas or citrus drinks. I believe it’s all environmental…God did not intend for us to have so many man made chemicals in our water, food, and all around us really…I’m sorry you don’t have someone to lean on…I will pray for you!!

It is terrible that doctors do not care to treat the pain away from you when it is possible with modern medicines to take it all away and reset the system.

@@Warrior4Him I came across some info about CRPS or RSD or Causalgia/allodynia and how the pain spreads in the body. The pain mechanism seems to be the same in the spine and in the spreading way and it is not in the head but in the spine. The nerve irritation can be for example a trapped nerve, nerve damage or a chemical or continuous electrical irritation, which makes the body oversensitive especially the skin. It helps for some people to get away from big cities and the sources of certain molds, which usually starts it all. Then chemicals, wood, glued new furnitures with holes, ink paper and even electric fields (some people get shocks from TENS (pain treatment device) after several days of its usage without having a break) can be too much. It has gotten better for some, who avoid all the sources of stress to the body whether that is the lack of sleep, scents, certain chemicals in the air and skin - natural or manmade. ONLY the medicine, which works for central nervous system seems to work like fast opiates and brain medicines except antipsychotics, from which I heard make the nerve pain worse. Acupuncture, tricyclines and gabapentine has helped many.

Yes you right I have had fibro,and CFS,and sciatica for 65,years its hell!!

It does get worse or can as we get older. Anyone who says differently has no clue what they are talking about.

​@@MomeGnome how about gluten free oats?? Any issues ?? Thxx

4000 years ago Hippocrates left humanity females precise 34 part recipe to treatments behaviors therapies mitigate eradicate cure #fibromyalgiasciatica bone-on-bone chronic pain immune deficiencies mental health spiritual health psychological health chronic fatigue PTSD deadliest to females 10 to 1 male lickety-split no failures as long as you follow the recipe!

@@MomeGnome I’m

I’m 71 and I’ve had fibromyalgia for six years. The last three years every week I probably stay in bed at least 1 to 3 days. I was told by one doctor that it could be the trauma that I experienced in my childhood. And that did make sense, but I don’t know what to do to not have these symptoms. I eat completely organic, I’m very careful about anything that goes to my body, but I don’t know what to do about it and I don’t know where to go and I just now ran into this website which I think I’ll do a lot more reading.

When I was still working. My late husband would have to come to the car and help me get into the house and get into bed. But, the person I am married to now probably wouldn't know if I died.

we, fibro suffers, are really a 'tuff' group of spirits, cause we do function and we do go on in spite of the suffereing that we can't describe and others do not understand, and we do look well....and we do spend effort helping others...today, i have just now heard about the vegas nerve in the crainial area and how fibromyalgia and whole body areas are affected by this...i have been needed to massage my scalp daily with essential oils, warming types: cinnamon, pepperment, etc. for a soothing effect....

@@TheLightbright01 so very sorry that you’re suffering alone. My fibromyalgia has lasted 50 years now and so many things make it unbearable. First, I don’t look sick; people don’t believe you can be in such pain without visable signs or a common disease such as cancer. Second; I now have sleep apnea which my doctors can use for excuse in refusing sleep and pain help. Third: my disease is definitely progressive with no HOPE of death any time soon. Therefore, I, like increasing thousands of chronic pain sufferers are agonizing over the prospect of suicide. I can’t bear the constant all body pain, the frightening nights of painful awakefullness and the “nervous wreck “ feelings without sleep. Each new day is a repeat of inhumane suffering with Kaiser here in California just saying “sorry, there’s nothing we can do.” It seems that only those with Covid receive attention and all else are kicked to the curb. If I take my life it will hurt my family and future generations. Breaks my heart. I don’t expect life to be without challenges and suffering but I have held on longer than I can bear. Death is on my mind daily. I a jealous when I hear of a death by accident or illness. Sad. No help. And I will not try therapy over a phone or with those things that cover our faces but do not stop something as small as a virus.

I do also believe fibromyalgia can be triggered by trauma of some sort I feel for any one with this condition it messes with your mental health big time

That's how it feels for me. I spent 20 years taking cold medicines almost year round and thinking I was just sick all of the time!

Carla, I see you! I believe you! You are not alone. It is very difficult for people who don't have the condition to really "get it". It doesn't go over very well when someone asks you "How are you today?" And we want to say, "Well, my mitochondria isnt processing very well today". That would produce a strange look of disbelief and confusion. But it's true! Every cell in your body is messed up and not producing energy effectively, but it's not easily observable by the other person. We really need a test that they can see... and a famous person to champion the disease to give it visibility. The problem is that people with moderate to severe ME/CFS don't usually become famous because there stuck at home, exhausted and bedridden. There's a long way to go. My best to you, friend.

YES!!!

😢😢😊❤

That's what I tell everyone it is like having the flu all the time.

Well it's ridiculous to suggest the illness is imagined. Forget about getting validated by others - find a doctor that is not ignorant and put your efforts and focus into recovery. Have you watched any of the recovery interviews yet?

Hi Patricia, sorry to hear you have been unwell so long. Look, given the nature of the condition , I don't' think we will see some magic panacea cure (there aren't a whole lot of cures out there for anything). However, people recover their health anyway, both partially and fully. I have been sharing how they do this in the recovery interviews for a decade now - check out some of the interviews! Also, check out some of the other resources on the cfsunravelled.com site, like the book - to learn how these recoveries happen so that you can personalise your own action plan.

Im that way now as well. I dont go anywhere but doctors visit. And after a trip into town i will sleep the next 2 days. I will have anxiety attacks the day before because i know how bad its going to hurt and how utterly useless i will be for days after. I still have teens at home. My doctor says the anxiety before leaving the house is akin to ptsd from the pain and situation. I have days i sleep 4 hours while the pain meds work...up 4 or 5 hours till the pain meds wear off then back to sleep for 4 or 5 hours. Its so bad my dr got me a home health nurse so that my b injections and blood work could be done at home. I have several other disorders as well. I have several drug allergies and the drugs for anxiety work the opposite on me. They cause extreme anxiety, intrusive thought, hallucinations and fear response. So i stay away from them. I have been to pain management after pain management clinc...always end up back on opiates. They are the only thing that settles the pain and anxiety..doesn't get rid of it just settles it for me to continue with life. Showers are impossible. Same temp water coming out of shower on place it feels like ice water another it feels scalding. And it hurts having it hit me...like stones hitting me. Then theres the chill afterwards that lasts hours..no getting warm. Which hurts and flares the pain to 9. I live at a 5 even on meds. The hope is to keep me out of the rafters. Many times i have went to rafters and have had iv meds to back it off. I also get infections...like feeling great and 5 hours later in an ambulance being wisked to the er. I once had a blood draw that was clean, 12 hours later i am in icu on 2 different antibiotics and my husband getting the "its up to her and God" speech. 5 times in 5 years and 8 in the last 12 years my family has heard the speech from "flash infections " except once with a reaction to the antibiotics....and once to my hemoglobin dropping to 3.3( yes you read that right). It was during the height of the lockdowns and they had to give me A- blood when im A+ they were calling the state dept or someplace like that to get blood from Canada for me. But luckily the found 2 matches in my area that donated and my body kicked back in. I have always been anemic and had b vitamin issues. I use lidocaine gel, lidocaine/prilocaine cream, diclofenac and pressure points to deal with the odd sharp pains. I say its like someone has a voodoo doll of me just sticking pins, nails or railroad spikes in me. The arthritises are no help either. 3 months ago i ended up in the hospital because my kidney was so full of pus and the dr who drained it said it was thick as toothpaste. Had to have a stint put in an at home iv antibiotics after a week in hospital with massive antibiotics. I never hurt in my stomach. I hurt in my shoulder for days before. I thought i had mucked up my shoulder again...nope referred pain. I had even been to the doctor for it. But no blood test...now every time i go in for anything they will run a screen on me. Since where i hurt isnt going to tell me whats going on. Its so bad that when the urologist and my infectious disease doctor cam in i called her by her first name and she mine...the urologist said its not good or normal to be on a first name basis. She asks about my kids and me about her dogs. I used to be an outgoing balls to the wall person. Never sick. Worked full time and went to high school and college while being married my senior year. Plus did debate and forensic and the school plays. I never slept more than 5 hours..couldn't. After my divorce work 60+ hours a week and did things with my kids. Then remarried had more kids did the whole from scratch cooking, canning , gardening and homeschooling. Never slowed down. Not even after my month in the hospital with the flesh eating bacteria. Came home with skin grafts healing and took one hydrocodone. I could deal with pain no problem. Then the fibro hit. I am totally a different person.

​@@mordeys I finally put two and two together when I had a horrible case of sciatica last year. I realized that the lidocaine cream and gel was actually making my pain worse. I hope this is not happening to you. I enjoyed reading your experiences. This health condition is definitely a puzzle.

​@mordeys, where do you live? What works for me I can't get cause everyone is trying to rid the world of opioid perceptions. That's why I was wondering where you live. Prescriptions.

I do understand everything you are saying. I have M.E.on top of that and pernicious anaemia. I have a wheelchair which I never used as I was determined to not use it. I had so many falls due to my spine I have arthritis there so falling seems to happen but I nearly died from last years fall when I split my skull open after a fall went unconscious then into shock I had 8 stitches but lost a lot of blood. I'm in the uk and I'm crying out for help but the pain of my spine is getting worse so I can't get outside without some help and my family just let me rot. I still try to do things for myself but there's only so much we can do. I ran a bath last week but I had no energy to get in and I had to pull the plug out! It's things like that. I watch summer pass into season after season dying to get out- dying to live but no one is there to help. There are many like us I still think we could be helped more. Please know that I know you are somewhere out there and I will pray for you and all our amazing Fibro Fighters! 🙏 ❤ 💐

I understand. I've dealt with fibromyalgia for over 50 years. I wasn't diagnosed until I was in my sixties. I'm 75 now and my Dr understands why I need mild pain meds. It's true about trying to make plans and then your body says, "not today!" I don't look sick, but few people in my life understand how tough some days are for me. I do the best I can every day. 😊

I have had fibromyalgia for 25 years. I have been taking amitriptyline for about 20 years and It has been a life changer. I don’t get as many flare up as I used to, and obviously stress adds to it. I hope this helps.

Its invisible so nobody understands

I have 6 auto ammune deseses.30years ago I only had cronic skin problem.got put on syclasporin then I got crone's deseas.got part of my bowl removed.steroids and morphen.then two bone deseases ousteperosis.then framalga.. when lockdown happened I got a really bad flu.. I've had pluracy before,but doctor said to stop my meds as I had pain in my lung's..that was one half year's ago and not been on meds since.i have no illness no crone's no pain nothing..I Will never take Meds again..and I will never take a virus test or the shot.i lost 30 year's of my Life in cronic pain and suffering like broken bones.noe I feel free from poison..and take holy communion and pray for the whole world..amen,🙏❤️🙏

Ann Elliott Thankyou so much for sharing! Glory be to God! This helps me to remember that God is in charge. In Christ by Mary, from Bernadette.xxx

So thankful for her that you love her still. My x hated that it stunted his life.

sorry MG about your wife. trama can make fibro worse, infact it can trigger it if you have it but not too severe. i was diagnosed in the 80's, my doctor then said to stay as active as possible and as fit as possible..as i did till about 14 years ago someone fell into me and broke 2 of my ribs. and then the fibro flared and has been a constant pain and other symptoms in my body since. they say it can go in remission, but so far no luck. i do find taking B vitamins helps to a degree, and staying away from sweets and artificial sweeteners, and ingredients i no longer use margarine, or eat a lot of packaged snacks due to the whatever they put in them. all it takes for me is to have that candy bar or slice of pie. much hugs to your wife. i wish her some comfort.

At least you care. Many men just get mean.

Thank you for being an understanding and sympathetic husband. My husband just doesn't get what I'm going through

My sincere condolences on the loss of your son. I have 2 and I just can't imagine the heartbreak. But, the most important thing for those of us with FM, is a good support system and just someone who loves us enough to really understand. You're a good husband. Bless you both.

LIFE 🤦🤦🤦

I totally agree with you Miriam. It does destroy lives. It is very hard to keep going when all you see is more pain etc. Gentle hugs, xx

It really is.

Exactly!

I hear ya I wish I new one person who has this so we could talk

Eliminate white flour/white sugar from your diet and take a body toxin remover.

I was like you sleeping all that time and still shattered. I avoided sugar, all wheat flour products, pasta, rice and potatoes. Made Keto bread if i wanted any bread.Bought Benfotiamine ( vitamin B1 ) feel loads better. I hope this will help you 🙏🙋🏻‍♀️

@@teresaspensley5640 good advice I hope it’s tried.

I'd rather be sleeping then in pain

I was reading all the comments I also have fibromyalgia and lupus they usually go together I take Adderall for both so at least I can stay awake especially when driving I also take methadone and have for 22 years I am 60 now just saying it works for me

You’re not crazy or alone. Super validating. Hang in there, you really matter! I do yoga and take Kratom for my pain, helps quite a bit....can be addictive. 🙏🏻🥰

As a man it's often a case of having insult added to injury - wrote about fibromyalgia in men some time ago: cfsunravelled.com/fibromyalgia-in-men-effects-beyond-the-symptoms/

So many mentioned support... I have some now but it's almost like too little too late.?? The support I have comes and goes along with apparently my believability! I have depressive bi-polar and the one person I have in my life will occasionally shoot me down saying that I don't have it! He claims all including fibro never existed before so in his all-knowing wisdom it is 'made-up' now. I have lost so much of my life and now my body is totally worn out, my knees, hips, back and neck are so bad I can't walk straight and my strength is failing. I used to be strong and able to do so much I am 55 and feel 105.

I’m 71 and I’ve had fibromyalgia for six years that I know of, I was on medication for two of them, something called Neurontin, which worked a little bit. But you are not crazy and you aren’t alone, but it is hard to get support from people when from the outside we look fine. If you ever need to talk to someone, I live in Denver Colorado and If any of you want to talk to someone that understands you can reach me at 310-405-5021.

Hello , I have a great niece she is 16 years old and has been diagnosed as having fibromyalgia. The NHS say as she is no longer a child then they will not treat her. She has been told that she cannot receive treatment for 2 years as she is not considered to be an adult either !!! How is this possible that they will leave a young girl in pain untreated because they say that she falls between being a child and an adult . Her mother is gobsmacked by this and so am I . I would welcome your opinion on this , have you come across such a situation in your experience. Do you have any advice please

Yes, after decades I've learned that complex trauma, complex ptsd and fibro are no coincidence. The pain, physical, mental, emotional and spiritual...I call it a pain soak.

I feel my health issues fibromyalgia being one of them was triggered by coming home from work and finding my husband deceased. He had beginnings of dementia, and other health issues for a year and getting weaker. From that day I have seen my health decline. I have anxiety, sensitivity to light and noise. Migraines, Hashimoto Thyroiditis, pernicious anemia, and fibromyalgia. I am in pain everyday. Fibromyalgia is real.

I feel for you because my father had fibromyalgia .

Emotional pain eventually manifests into physical pain

​@@mh.1568I'm sorry that happened to you. That has to be so painful.

I’m right there with you.

I'm right there with you, Vickie Richter and many many others also...

It's ridiculous - I have been thinking about making a video about this, so look out for that.

Fibromyalgia is real alright!!!!! I manage mine by staying clear of all white shaded food group--- no white spuds-- pasta--- sugar---flour---salt--- it suppresses yr immune system and also can flare up yr fibromyalgie---- eat fisg-- nuts--- fruit and vegetables and eggs---- I went gluten free and that helps also--- I make my own gluten free cakes--- stay clear of citrus -- 🍋 lemons can be a culprit also--- what we eat is who we are--- GOOD LUCK GIVE IT AGO AND FEEL THE BENIFITS---

Dybeates--- ibs---- fibromyalgia---- weak auto immune system --- I was told they all stem frm each other --- I have all of them---

​@CFS Unravelled they blame everything on us having fibro. My Doctor said that amongst my other illnesses, there is something else wrong but well don't know what....

@@quinnitaj4653 oh yeah, It’s a thing, but I don’t want to respond to “What hurts?” anymore. Everything hurts! The best way to explain it is that it feels like my blood is on fire. That’s all I can think of. Who can relate to that?

Flu on crack was a perfect discrimination ever.❤❤ Heads on over drive in a body that is stuck in netural. 😊

LOL rolling on the floor and everything else that comes when you do not spell check I did not mean discrimination I meant description this is why you don't reply on Ambien oh my goodness.

When I was diagnosed it was a relief, was thought to be a hypochondriac for a very long time as well.

Same here, I feel achy all the time. On top of having Fibromyalgia, I also have RSD Reflex Sympathetic Dystrophy it is painful and having both is awful.

So sorry for your loss.

Please read my comment above, there’s treatment for it

I have people in my life who are oh, so _inconvenienced_ by _my_ illness. As if I'm causing _them_ such suffering by being a bad sick person. I've cut so many people out of my life because they were making me sicker. The anxiety of worrying about their outbursts towards my "hypochondria" was wearing my adrenals down... It gets lonely, though.

I absolutely empathise with this. There have been quite a few times I've been left feeling sad and guilty for being too exhausted and/or in pain to do something that's been asked or expected of me by someone who doesn't take fibro seriously.😔

That sounds awful im sorry you have to go through that. My girlfriend has fibromyalgia and i’m doing as much research as i can so i know how i can support her. I relate to the “other people finding it inconvenient” thing as i am autistic and spent my childhood constantly treated like a burden on everyone else. Can’t go to huge parties, can’t make eye contact particularly well, often speak very loud or very quiet. All of this is apparently “embarrassing” for other people. I won’t pretend to know what its like to suffer from fibro (and autism is pretty different since its in some ways a disability and in some situations a huge advantage) but yeah. Always seems like non disabled people think my disability is *their* big sob story. Everyone wants to “cure” autism - not because they give a toss about autistic kids, but because they don’t like changing their plans or slightly altering the way they speak in a way that mildly inconveniences them.

thank god hopefully u can help educate. I am a former RPN myself and have fibro as well as my son 29 who is also an RN and was diagnosed with it at 17. his late father had it also. thank god neither of us gets the brain fog or memory issues but the constant throbbing aching pain sugar cravings for me skin sensitivity to touch the bad sleep and other symptoms are so draining. then the fight for pain meds that actually work in doses that work for me with a high drug tolerance is ridiculous. i can't take any of the fibro drugs bad side effects. my son can't take pain meds at all due to being a working nurse so he suffers with just stuff like robaxacet to help him. he is 6 ft 6 in and been in pain since age 2.5 yrs. i wish more doctors would realize just how bad life can be with this disorder esp when combined with other things like spinal damage, disc disease, arthritis etc. and stop telling us we have nothing wrong with us.

Wow.

Thanks LadyAnna. I'm pretty much in same position , I fight every month for pain medications with no family support. Medicare and Medicaid both have free to you in NV State , maybe your State also that will pay a caregiver to come help and visit in home several times a week. Some will do lite house work, like cleaning , cooking on their own while visiting , others will so some grocery shopping, cooking, help getting up, dressing. And they just get paid to come sit and visit but have been know to do other extra things around house and take you to doctor appointments . States pay into these programs from Federal funds. They will also pay family member that comes or lives with you on regular bases. Human Resources Dept.. Try talk to them for help. May be worth a try as in younger age and older people these symptoms are extremely debilitating at times where its hard just to get out of bed and walk. They also pay for walkers, elec chair ,,etc when doctor prescribe them but you have to ask doctor to order it. Best Luck..Vonnie in Vegas

Look into Psoriatic Arthritis. I have Fibro too. The back pain is very much a Psoriatic Arthritis issue.

Wonderful analogy about the Hoover! The fatigue is undescribable and so is the depression. I can't walk very well anymore, my feet & legs are like wet noodles. At 60 years of age I'm giving a wheelchair a lot of thought. I certainly can relate to your exhaustion its horrible n my family believes I'm lazy or "put on" these symptoms.,😖. It's all very frustrating!

@@donnalowe5791 I know it's the most cruel misunderstood illness. If anyone ever asks how you are say " From the neck up I'm fine!" That excludes the rest of you which is not fine. I was given a wheelchair years ago when I was still able to walk they said " you'll need it" I don't use it as I have no one to push me and if they did it would be downhill!! I'm thinking of getting one of those smart mobility scooters. I live here in the uk where care is abysmal. Because you look ok people think you are ok- well from the neck up most of us are fine! I hope and wish for you all the best. I will remember all you fibro warriors here in my prayers. Stay strong! ❤ 🏴󠁧󠁢󠁥󠁮󠁧󠁿 ❤

@@westwinds6034 Thank you for your lovely reply. I live here in the uk where care is abysmal. Its a lonely cruel misunderstood illness and we are real warriors if you ask me. My family don't understand either or care to understand. There's nothing we can do except carry on as best we can. Take one day at a time, tiny steps we cannot do more than that. I'm thinking of getting one of those smart mobility scooters as I never get out. I don't like the thought of them but I'm a prisoner in my own home! Just stay as positive as you can I know it difficult, not easy at all. I will remember you in my prayers as well. ❤

Very true. I wished ppl would get educated on it

Cus of toxic GMO in food and pills and vaccine and water ....ect

They are, they just ignore it because they don't understand. Then it's easier to ignore or say 'it's between your ears'. Imagine a doctor has to say 'I don't understand but you're sick'. Many doctors (luckily not mine) won't do that, they're too arrogant for that.

It's linked to Narcissism pathology and CPTSD, but medecines as science devides things into compartments and so miss to make the right connections to understand how to treat it!!!

I just wish more Drs believed it is real. I think most of them still think it is just a catch all for hypochondriacs. I have had this for decades, from soon after a complicated pregnancy and delivery. Within a couple of years there were days I was unable to get out of bed the pain was so bad. When the pain got somewhat better I stiI ll had to deal with the chronic fatigue and bowel symptoms; very hard to hold down a job with those. I am now 65 and still have most of the symptoms but less often and less severe, only now have severe arthritis thrown into the mix. Damn.

I can so relate. Seems as though I was the only one of my friends who had to endure so much pain all the time.

Research CBD oil made from hemp. It has helped me. I buy Colorado made oil because that state has the most experience in making it. Best wishes.

paula null I’m from England suffer like many could I get this delivered I tried every medicine bought cream and capsules of Internet had an awful 4 years lost my husband and grandson which has made me worse trying to be strong for my daughter but any help would be good I’m 68 I know loosing my grandson made it worse drs don’t help 🙏

I totally understand. I, too am 66. When I was in my 30’s I started having issues. Spring forward to 60 years old and I was diagnosed with fibromyalgia by a Rhumatologist. I also have a very rare form of leukemia.

Caz Espino you can find very good CBD oil in Holland & Barrett, unfortunately it sells fast, it’s also available on Amazon. Hope this helps.

Hope you are doing good!👍

Yes so familiar....Could you tell me symptoms please if you don't mind.

I ferl the same.

Heard all of these from different doctors

Bless you. There are many enduring what you describe. Yes,even family think you're lazy,or some say u don't have enough faith,or it's hubris. It's a disease or syndrome that may not kill you but makes u sometimes wish it would. I worked two jobs,had kids,was active and then nearly bedridden. Once I tried support groups but still am too exhausted to even plan to go. U are in my thoughts. Stay strong

Yes or...you don't look ill

Paula Gibbs absolutely

Oh. My. Gosh. Yes! “Aww you’re too young to feel that bad...” 🙄 spare me

Paula Gibbs I hate it when doctors say exserize it’s good for you, hello stupid doc how the hell can I do that when I’m in pain , bladly idiots

Yes!!! Or it's all psychosomatic!!! Are you f...king kidding me???

Bluebird lane , ur comment is very interesting. My daughter has the pain in her veins and them coming to the surface! We have been trying to see a diagnosis of vasculitis but all tests say no .. This is the first time I’ve heard about the vein symptoms.. She has all the symptoms of fibromyalgia but the vein thing threw us! Can u tell me more about your vein symptoms..

Do you hurt deep within your lower legs when you walk?

The reason I'm asking is that it seems as if the fibromyalgia has settled in my lowers legs to the place where it is extremely painful when I walk. Sometimes to the point that I can only walk 5 mins at a time.

Education is key to recovery, so good to see you working on that. This video may be helpful on dealing with others ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-kXKDwHMq8Xs.html

Nice to hear your okay now.. Fibro is differ from sjogren's?

wow yes, "my skin feels bruised" that's exactly the expression, totally!

yes no Thank you so much, but for us severe sufferers like myself, it was upsetting! It’s taken Lady Gaga to get ill for it to become more known & in the news............Unfortunately this doesn’t help us fibromyalgia warriors, what helps is kind people like you taking a interest, thank you & gentle hugs 🤗 x

I've heard that Morgan Freeman is also a sufferer.

The thing about celebrities having it is that they can afford to see doctor after doctor and get the help they need. The rest of us can't.

@@pjaypender1009 There is no help or relief for people who suffer with Fibro😢

@@pjaypender1009 I can, we have healthcare here, but it's no use. They don't know what causes it. Healthcare or not, there's no answer. Yet.

Or long hot baths like an hour with Epsom salts , dim lighting and self massage in tub.

Yes, hot water feels good.

I need to be in one right now. ❤

I had a hot tub in the beginning. Saved my life. I may need one again. Swimming also helped

I take very very hot soaks ( add pots of boiling water to bath as my water heater never gets it hot enough,) in Epsom salts , daily. I HIGHLY recommend it.

That’s exactly how I explain the pain

That's the kind of pain I get from my top of my to the bottom and my arms and legs. Some days worse than others but everyday I have pain somewhere in my body.

Spine

I know how that feels. I feel like my bones want to break in my arms

Yes that's exactly how i feel it - a toothache in my body that never goes away.