Burning sensation.

[7Victoria]

I’m wondering if anyone with PMR has experienced burning sensation throughout body. It feels like acid flowing through bloodstream. And mostly aware of it at night.

If so how could it be treated?

[Jackoh]

Yes I remember feeling like that right at the beginning of my journey with PMR. I tried explaining to my rheumatologist who said he hadn’t heard of that. Since changing my diet , very low carb, anti inflammatory and intermittent fasting I haven’t had that sensation.

[7Victoria in reply to Jackoh]

Thanks for your reply. Working harder to modify diet. Been Gluten, sugar, dairy free since diagnosis and working on other areas. My gp doesn’t understand that diet can improve condition.

[Rozzyt]

I have a slight burning sensation going from groin in to legs. I haven't sought out any advice. A bit uncomfortable.

[Koalajane]

My shoulders feel like they are burning sometimes

[PMRpro Ambassador]

All night or a specific time? I find muscles feel burny if I am hatching a flare ...

[SusyTe]

Yes - sometimes I have a burning feeling flowing through my body when I am lying down - such a weird and unpleasant sensation - I sympathise. Unfortunately I haven’t found anything to stop it other than movement and distraction.

[Bedwell]

I have had burning knees and feet at night fir some months now. I thought it was connected with osteoarthritis in my lower back. Didn’t connect it with pred! I sometimes have to get up and sit in a cold bath! I keep ice pack by bed.

[Odosmum in reply to Bedwell]

I have burning in my feet and legs, usually at night when I am in bed. The heat makes it worse. My GP thinks it is nerve damage from either Leflunomide (which I have taken for several years) or diabetes (which was brought about by heavy doses of Prednisolone). I find Pregabalin helpful. I only take it when other measures are not working. I use a gadget that holds my duvet off my legs and a pedestal fan in hot weather. They do help.

[cycli]

Yes. I have tracked this feeling for several months. It occurs mostly when I have been doing something which requires me to stay in the same position for a reasonably long period. For example when sharpening the teeth of my chainsaws. I am in a standing stance filing at an angle and legs set at a fixed position. I have to break off and walk around to release the feeling. Movement works. I'm not sure what it is though. It's not fluid swelling related and it's not cramping from contracted muscles. I wonder if it is related to muscle breakdown and wastage which is a feature of pred.

[PMRpro Ambassador in reply to cycli]

Is it pred - or is it myogelosis which is a feature of PMR?

[cycli in reply to PMRpro]

I'm not saying the burning feeling is caused by pred. It is not myogelosis. The feeling is not pain but a definite burning feeling which is similar to a nerve condition I sometimes get. It's always related to being in a staticposition for a period of time.

[PMRpro Ambassador in reply to cycli]

I found my muscles sort of burned as I tried to get moving after a period not moving - in the car for example. And it was a lot less worse then if I was driving as you are moving a bit all the time with changing gear and so on. I put it down to the muscle fascia stretching and moving ...

[7Victoria in reply to PMRpro]

Thanks for your reply. Mine was mostly at night in bed but recently is more constant - and not just legs.

[cycli in reply to PMRpro]

It's the not moving which appears to be a common denominator. Mine is most definitely so. I'm sure it could come on from sitting without any change in position but when standing in a posed position loading the legs and doing a repetitive job for long periods it comes on. It is some form of muscle contraction issue and relieved by movement. I just walk around until cleared. It is upper leg/thigh mostly.

[Teekay2]

I have RA and GCA and have had burning sensations in my legs from the knee down for a few years now. It happens when I am lying down night time or pm nap.Not every time but feels as if on fire but cool to touch.When I get up it eases.

Spoke to my new consultant last week and he is the first to acknowledge it and is sending me for some nerve investigations.

[7Victoria in reply to Teekay2]

Thank you Teekay2, I’ll be interested as to how you get on. Mine was only when lying down but is now pretty constant/ can be all over including face/ lips etc but at the moment is most intense below my knees. I’ve had PMR for more than 5 years now.

[Odosmum in reply to Teekay2]

See my reply to Bedwell , above. My TENS machine sometimes helps too.

[jaycee444]

I always felt from the start that my PMR pain presented as a severe burning pain. It is different from any other pain I have ever had so that when it returned (as it has done on a couple of occasions whilst tapering) I always recognise it as opposed to ordinary muscle pain if I have overdone things.

[Bedwell]

Really only lying down.. burning throbbing! Knees feel inflamed anyway but nothing like the burning when lying down!My pain initially with PMR was shoulders arms wrists.. not below waist.,and a different sort of pain from this night one.

[PMRpro Ambassador in reply to Bedwell]

All over or anywhere specific?

[Bedwell in reply to PMRpro]

Knees and feet! As I said …not the areas where I had PMR either time. Always above the waist .. in 2017.. and April 2021 when it happened again after my second Pfizer jab!

[PMRpro Ambassador in reply to Bedwell]

Wondered if it was outer aspect of thighs - bursitis is a burning feeling and often worse in bed as you are lying on it.

[Bedwell in reply to PMRpro]

No it’s definitely knees and ankles . Not so much thigh.