Tingling, burning and crawling - what are altered sensations in MS

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In this episode, we talk about altered sensations. So what are altered sensations then? They are a bunch of sensory symptoms that can occur in MS, such as burning, tingling, pins and needles, crawling, numbness, prickling and the list goes on!
We talk to Dr Amanda Howarth, a pain specialist about what exactly they are and why they happen. We also share some of the MS community's life hacks around living with altered sensations.
00:22 Intro podcast
04:35 Pain specialist Dr Amanda Howarth Introduction
05:20 What are altered sensations?
07:44 How long do altered sensations last?
08:10 Can altered sensations be painful?
09:12 Can they get misdiagnosed?
11:01 What treatments are there for altered sensations?
16:28 Are there any triggers to avoid?
17:35 Who can help you if you have alerted sensations?
Questions from the MS Community
20:08 Do altered sensations symptoms never go away fully, do they just vary in severity?
21:22 I have a burning pain in the same finger. It lasts for 15 mins. Any hacks?
23:19 I would love to know what people do to prevent or treat. Numb, white, cold fingers and toes
25:50 Whilst walking I can feel my leg getting warmer. Is there anything I can do?
27:36 My torso went numb, how long is this likely to last, and why did I get such strange feelings from touching the numb area?
32:28 MS Trust resources
35:20 Life hacks for Pins and Needles
38:56 Life hack for pain
43:20 Life hacks for numbness
Episode notes:
- MS Trust A-Z page on pain: mstrust.org.uk/altered-sensat...
- MS Trust A-Z page on pain: mstrust.org.uk/pain
- MS Trust Blog - What's with the strange tingling, crawling, burning and prickling feelings?: mstrust.org.uk/news/expert/wh...
- MS Trust A-Z on Complementary and alternative medicine: mstrust.org.uk/complementary-...
- MS Trust A-Z on Cannabis: mstrust.org.uk/cannabis
- MS Trust A-Z on Sativex: mstrust.org.uk/sativex
- MS Trust A-Z on Gabapentin: mstrust.org.uk/gabapentin

Опубликовано:

5 фев 2023

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Комментарии : 21

@lauraluffman6177 2 месяца назад

I got these altered sensations too found out later alot of its due from MS I was so scared I thought I was dying

@mstrust 2 месяца назад

Thank you for sharing. That must have been such a scary experience. Sending you best wishes from the MS Trust.

@sheilaratcliff4833 8 месяцев назад

In USA.... Red dye 40 and aspartame are triggers for me as well as low blood glucose and storm fronts!

@elliejobonney2926 Год назад

Hellllo there! Well happy to have found your podcast xxx New subscriber

@mstrust Год назад

Hi Ellie, Thanks so much for listening. We hope that the information is helpful. ❤️ Nick, the MS Trust

@ChooseHope 7 месяцев назад

OMG! I’ve had a sunburn feeling on the back of my right thigh come and goes for several years. Last week it came up on the front of my right thigh. 2 weeks ago I started getting a hot flash sensation on my left foot starting on the bottom of my heel and runs up the lower part of my leg. Such bizarre sensations. I had no idea what all of this meant.

@mstrust 7 месяцев назад

Thank you for sharing your experiences with altered sensations. 💙

@bubblybernice4863 Год назад

I haven't had a diagnosis yet. I have been sick for a year. I've been to my GP five times and the eye doctor twice to rule things out. It started with massive pain and pressure behind my right eye. I've had the worst fatigue (bone-deep tiredness) and body pain and weird tingling in my arms and legs (like chills but not). Now I have sharp shooting pain in my toes, fingers, hands, and feet. I'm sick for days at a time. The severity changes. I feel better for a few days and then I'm super sick. This waxes and wanes. It can be utterly exhausting. I'm the one thinking it might be MS. I'm requesting a rheumatologist or a neurologist to look at me. She says she wants me to come back in to discuss this.

@mstrust Год назад

That sounds very frustating. If you GP hasn't been able to identify a cause of the altered sensations and fatigue then it is reasonable to ask them to refer you on for specialist investigations. Only a neurologist can diagnose MS - you can read more about how they do this here: pulse.ly/k8zhmhupd9 A rheumatologist could look into other inflammatory conditions that may cause chronic pain and fatigue. Usually your GP will need to do a panel of blood tests before referring you on to a specialist. This is in case you have certain deficiencies or abnormalities in your blood tests that could provide an explanation for your symptoms, such as a B12 deficiency. Flora, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk

@bubblybernice4863 Год назад

@@mstrust We have done that. Blood tests, vitamin deficiency tests, and a CT scan all normal. I'm anything but normal. Thank you for your help. I will continue to advocate for myself.

@lucialeguizamo5440 10 месяцев назад

Hello there about 3 weeks ago. I started having altered sensations ita started off as some itching late at night where i could not sleep, It kept me up all night. Second night was worst its like my nerves were firing all over my body crawling sensations constant allover my face, ears, genital area it was very aggressive. I was so scared and convinced I had an infestation but there wasnt. Then, it continued with burning and stabbing and numbness in my toes and back ect. I had no sleep it was keeping me up constantly it was getting me suicidal even though I have mental health this just makes it worst. During the 2nd week symtoms died down and subsided where ot was just tingling a little burning. 3 weeks now and symtoms are starting to get worst again and i have been prescribed gabapentin as I had to push my GP for this and awaiting on a MRI scan which I hope they find something other than MS they can cure😢. Very sad and depressed at the moment as I have limited support at home. I was hoping this would wear off but its chronic parethesia so bad the meds at 100mg for 1 week but 2 week I have upped to 200mg and I feel there is no change. Now its affecting my head like I have head lice crawling in my head stabbing aswell and pressure on my face like someone was pushing on it. Always starts in the morning and works its way through my body I am at my wits end. What can this be? If someone could shed some light on this Please?

@mstrust 10 месяцев назад

Hi Lucia, Thank you for sharing the symptoms that you have been experiencing and how it has been making you feel. It can feel frustrating and worrying when you aren't sure what is causing these sensations and it may not be MS so try to keep as calm as you can. Unfortunately, there is no definitive test for MS and diagnosis will involve considering the various symptoms and ruling out other explanations which means the process can take some time. The symptoms you have mentioned can be seen in MS yes such as the itching, stabbing and crawling sensations, however an MS diagnosis can be a difficult and lengthy process as none of the symptoms seen in MS are unique to the condition, so diagnosis is made by differential diagnosis - the process of finding the cause of symptoms is by ruling out other possible causes - as there is no one test that on its own will show that you have MS. There are many other conditions where the symptoms seen mimic those seen in MS including infections and vitamin deficiencies to name just a couple. Your GP may decide to take some blood for testing which is something that you can push for too. You can read more about how MS is diagnosed here: pulse.ly/irm0skknax I hope that you have your MRI scan soon and can find out more as to whether it might be MS or not so that you can know what is causing these sensations. You might like to have a read through our managing nerve pain page here which may help with easing the sensations such as using ice packs or trying gentle stretching as well as the other medications that can be taken to help: pulse.ly/fata2glpun I do hope this information is helpful for you. Take care, Corinne, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk

@Amoursierra_ 4 месяца назад

How are you now ?

@jasminebarillaro8049 10 месяцев назад

What if you have burning pain and a new spider vein develops as a result. On my MRI, it shows a disc pushing on L5 nerve.

@mstrust 10 месяцев назад

Hi Jasmine, Thanks for your message. It might be worth speaking to your doctor or specialist about this as the burning pain maybe being caused possibly by the disc in your back pushing on the spinal cord, however, we are not medically trained on our helpline. There is some general information here too on the NHS website about slipped discs which you might find useful: pulse.ly/9kzx12dj07 I do hope this information is helpful for you. Take care, Corinne, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk

@user-tm4zw8br2l 11 месяцев назад

Please help me, my body has altered sensations from head to toe. Burning brain, pins and needles in my finger tips I can’t feel this screen properly. Started shortly after the Novavax booster losing urine when walking over a year ago. Head pressure often. Tried Lyrica and Targin not on anything today, can’t get off of the couch, lost smell in a way. Incredible pressure in the brain at tomes. Constant pain in the brain. MRI is mild burden small vessel ischemic change white matter exceeds persons age. Please help i’m in a bad way. Trying everything. Nothing is a cure. Feels like sunburn all over that’s a good way to articulate it, that’s how I feel. My heater is on full, i have two doonas and I’m freezing. I’m in Melbourne

@mstrust 11 месяцев назад

Hi Sharryn, Thanks for your message. You may wish to report the side effects you have experienced from your Novavax booster through the Yellow Card Scheme here: pulse.ly/f6ej2q9xrr However, it might also be worth exploring more about the symptoms that you are experiencing if they are worrying you and if they aren't easing up. The best place to start is by talking to your GP/family doctor and it can also help to keep a running diary of the symptoms you are experiencing, when and how long for to help build a clearer picture for them. If your GP or doctor suspects MS they will refer you to neurology. Many of the symptoms seen in MS can be seen in other health conditions so they may decide to take some blood for testing to rule out other things. You can read more here about how MS is diagnosed: pulse.ly/xwfrj74olm This page might also be useful for you too as it talks about early MS symptoms and how to deal with uncertainty while you are waiting to find out more. It is important to remember that some symptoms can be treated before your diagnosis is confirmed. Talk to your GP about what can be done to help you manage the symptoms you are experiencing now: pulse.ly/l8e9bljdwn You can read more about how to treat altered sensations here: pulse.ly/z232crprn2 I do hope this information is helpful for you. Take care, Corinne, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk

@klarastepankova9757 7 месяцев назад

Hello,Is that burning feeling serious flare -up that destroys myelin in my brain and is needed instant medication (Solumedrol) infusion in the hospital? or is that only a common symptom that is just goes with this kind of disease and it do not affect myelin in the brain and it goes away after a while ? I am dealing with this. I am so worried.My neurologist do not know much about this. Somebody please help.So happy for any answer.

@mstrust 7 месяцев назад

Altered sensation feelings are quite a common symptom of MS. It can be part of a flare up and it can also be a symptom that varies from day to day. These fluctuations can be triggered by infection, getting too hot, stress or anxiety and other factors. You would need to talk to a doctor to understand what is happening in your case. There's more on altered sensations at pulse.ly/hwndnz8rih and on relapses/flare ups at pulse.ly/vtdawwpxdw If you are not in the UK, it may be worth looking on the MS International Federation website to see if there is an MS organisation in your country - pulse.ly/n94uowg0zb

@klarastepankova9757 7 месяцев назад

@mstrust I had pretty much terrible anxiety last week because of broke up, also having an urinary tract infection it can be it.Thank you so much.

@beaumcgrath1420 4 месяца назад

I don't find physio has helped get rid of the steady pins and needles in my body. I have never been free from pins and needles since 2012. When I do finger exercises, I find the pain get a worse. I said this a motion disease as well. The faster I move the worse things get. We I operate machinery, my hands go crazy with pins and needles multiplying in my hands. I haven't noticed my leg getting warmer as I walk, but my leg goes to sleep as I walk, and I need a cane for aid.