Wondering

[MaryA_]

I’ve been having nerve ending discomfort in my feet, legs n buttocks for 6 months now. Seem to be worse at night Question: will it go away at some point. Is it the prednisone or the PMR?

[SheffieldJane]

That sounds very unpleasant. Have to consulted your doctor? It may not be related to PMR or Pred.

[Dream21]

I had tingling in my hands and numbness. (PMR, GCA). The neurologist tested my nerve conductivity. Three out of 4 hand nerves had slowed. He said he sees this in inflammatory diseases. I hope you check with a doctor to see what is causing your pain.

[PMRpro Ambassador]

Has this been diagnosed by a specialist? It can be a symptom of vasculitis so it does need to be investigated. Is your diagnosis "just" PMR?

[Hidden in reply to PMRpro]

Question is how do they "investigate" it?

In my case, it's often dismissed by "F" words. Fibro.

Seriously. Mind you, my case has gone to the Parliamentary Ombudsman.

(not sure how the outcomes would be) But I doubt if it's just me.

[PMRpro Ambassador in reply to Hidden]

Ah well - when you come against the "f word" you probably are in trouble! New doctor who doesn't have pre-conceptions???????

[Marijo1951]

I posted on this subject a few months ago and got some very helpful responses (heading was 'Legs on fire'). Some people had found relief by taking Gabapentin, but I never got as far as taking it. I had nerve conduction studies in January but the results were normal. The distressing nerve sensations had faded quite a lot but they seem to have come back in force in the last couple of weeks, waking me up between 1.30 and 3 a.m. I'm not sure how to take it from here but I'm less worried about it than I was as, annoying though it is, I don't think it's actually serious.

[Hidden]

Hi MaryA_, Not sure exactly what you mean by nerve ending "discomfort." I started with weird, nerve ending aches/pains, but in the last 3-4 months it went into full blown peripheral neuropathy! My feet and hands (mostly feet though) are numb, cold (but warm to the touch), tingly, painful, ache with a weird burning sensation, and feel like there are creepy crawley's things under my skin!

I had an EMG last week and the results were, "Normal." I was told that just means that the peripheral neuropathy is not being caused by damaged nerves or nerve coverings, but the cause is still unknown. It was suggested I see a Neurologist. (Oh goody!)

Talk to your GP or Rheumy as mine condition changed within a matter of months... from a "weird" feeling to total numbness, where I'm now questioning, if "it" was the cause of my "tumble" less than a week ago?

Get it look into!!!!!!

[Mgt1234]

Hi MaryA, I too suffer with this. I tried Amitriptyline prescribed by my GP all that seemed to do was make me tired and gain weight, so that wasn’t helpful long term. My best friend is my electric fan, when my legs start to burn I use it in the lounge (aimed at my legs). I never have my legs covered in bed .. in summer I use a fan in the corner of the room with a timer, operated by remote control and in winter, I use a frame to keep the duvet from touching my legs. I find the stabbing in my feet is worse when my feet are hot, hence the fan. I hope this helps a little.

Margaret x

[MaryA_]

Thanks for the response, mamic1 you have described it perfectly. I’ve wondered to if that’s why I feel so off balance sometimes. PMRpro, I see myPCP on Monday and ask about the vasulitis. I got through the winter ok but now it’s summer and friends and family wanting to do things and not sure I’m up to it all 🤔. To add to the mix I was diagnosed with medastatic breast ca in the lungs. Just want to say that with the new meds and treatment I do have a fighting chance with this. With the mix of PMR and all its symptoms, it’s hard to sort it all out. I feel sometimes it’s just my over active mind! Life has change so much over the past year n half , not liking it much. I want it back! This site has been great help to me, don’t know what I’d do without you all Thanks maryanne.

[Chihuahua1]

Without wanting to scare you I was getting the same symptoms and I eventually saw the GP who opted to get me an MRI. Mine has turned out to be a cyst on my lumbar spine causing compression of the cord and narrowing of the canal. They are going to drain it for me but they seem to be taking their time getting to me at the mo. Such is life. So I would get it investigated if I was you.

[MaryA_ in reply to Chihuahua1]

Glad that they discovered the problem for you and can resolve it. Hugs to you 😍

[Linny3]

Sorry to hear you have developed this condition. I have it and it comes and goes. The best thing I found for it is to wear compression stockings at night and use the homeopathic "restless leg syndrome" I know it is not restless leg but it does seem to help. Also the rub

"biofreeze" helps a lot.

I agree with others, check it out, cause you don't know exactly why it is happening. I know for me it is the pmr. and prednisone.

[MaryA_ in reply to Linny3]

Thanks Linny3. I will ask doctor about the compression sock at night also. Thank for the feed back. 😀🌷maryanne

[Purplecrow in reply to Linny3]

Linny, you have hit on my exact remedy for the creepy painful legs. The homeopathic "leg cramp" , contains quinine sulfate and works like a charm for me! Also biofreeze is my best friend for upper back shoulder muscle pain. Love the topicals when they work!

[GpaJ]

Your symptoms seem very similar to mine, which began on Friday 13 April '18! My GP got me an appointment with a Rheumy very quickly and also organised some physio sessions for me at home. I am unable to have an MRI scan, as I have an implanted cardiac defibrillator (ICD), but did have a CT scan. I am expecting to get the results this coming week. I would suggest you talk to your GP with a view of asking if it is possible for you to have a scan. You have my sympathy, it is MOST unpleasant when the buttocks are painful! Incidentally my Rheumy did not think my symptoms were due to PMR and he is very keen for me not to escalate the steroids but to wean down over the next 2-3 months.

[HeronNS]

Could be from the spine. I had spasmed muscles in my back, which I didn't know about, but a physiotherapist discovered and treated (dry needling). With that treatment chronic lower back pain eased, and painful hips got better (for a while I thought I was heading for a hip replacement it was so painful). So, not really anything to do with PMR, but sure didn't help the situation.

[Ciar]

I also have similar problems with neuropathy. For over a year I’ve been in and out of the MRI, last week for my neck and head. They’ve found unexplained large areas of inflammation on my lumbar spine, but not anything that needs surgery, but my neck has 3 disks that are compressing my spinal cord, that will need surgery sometime...I’ve been putting that off. I’ve had tons of blood tests with no unusual results. Meanwhile, the nerves in my feet have become so jangled and numb that my doctor thinks I have tarsal tunnel syndrome in both feet. My arms, legs and lower back end tingle most of the time as of last month. I’m literally becoming a nervous wreck, haha. I’m waiting to get scheduled for EMG to locate source of this. I’m convinced that there is more than one cause for this, but it’s very hard to live with. Everyone else with this stuff has my sympathy.

[MaryA_ in reply to Ciar]

Thanks for your input, it helps. It’s weird because some times I think it’s getting better n then its back worse than ever interrupting sleep. Last night I took a Tylenol PM and got a great nights sleep! Though up this morning. Again thank s. maryanne.