Severe Muscle and Nerve Pain...At a loss

[Jeigh44]

Hi friends,

I am having a really hard time.  Recently, out of nowhere, I am having severe pain in my legs. I always have achy and sore legs but this is the worst I have ever experienced.  It literally feels like someone is setting my butt (near my sacrum) on fire.  It is deep and burning and spasms from time to time. Next, it feels like the nerves in both legs are tight, tingling, and burning all the way into the toes.

The odd thing is that I have no muscle weakness of any kind and my legs remain super limber. I called my rheumy and he did a full blood workup and included CK, etc. and all came back fine.

I feel like an insane person because it hurts that bad.  Maybe it is just fibro?  Do you get severe muscle pain with your Sjogrens?  Thanks friends. 

xo
J

[meirish]

I am sorry that you are suffering so much from this. Yes, there can be issues like this with the Sjogrens. But, it would be of great help I would think if you were able to see a neurologist. These type of doctors are able to deal with these types of issues which are very often from neuropathy. There are so many autoimmune and other issues that can cause neuropathy and it is best to get a diagnosis that isolates the problem which makes treatments more easily done.

A person doesn't need to have weakness is a body part to have this kind of pain. The nerves of the body and brain can send signals every which way in our body and cause a lot of misery. It is so important to get an accurate diagnosis because it really makes a difference in the treatment. You deserve to find some relief from all this pain. I hope that you can find a doctor who can help you. Good luck and please keep us updated on how you are getting along. Thanks. meirish

[Scottietottie]

Hi 

i've been getting a fair degree of pain and I suspect a neurologist may be more useful than a rheumatalogist. I have ne trying to find answers anyway. I'm in the UK --- and everything takes awhile.

Take care - Scottie 

[meirish]

I just reread this post and remembered that we had someone on this site years ago who had a similar problem. Seems like it was diagnosed as a pedestal nerve issue probably related to autoimmune disease. I hope I got that word right. Pudental nerve runs down thru bladder/genital area into sacral area if I remember correctly. Thanks meirish


1/19/23     I read this again and I was trying too say Pudental (I believe that is correct) nerve and the computer changed it to pedestal which makes no sense at all. Pudental nerve  which affects nerve pain in the "bottom" so to speak. The sacral and peritoneal area. Can be miserable pain.

[Kelley170]

Hi!

I'm sorry that you have had such pain!

I was diagnosed with SJS about 9 years ago. My presenting and most severe symptom was muscle spasms. I also had tingling and prickles in my legs and hands, which were mild at first but progressed to severe sharp pain in my hands and lower legs. I also had burning pain in my lower legs, along with a vibrating feeling (which were all intermittent and worsened with activity).

I went from Dr to Dr (before going to a rheum) and no one knew what to do. I looked "normal" and they just passed me around for about 4-5 years. My spasms progressed and finally I was sent to a rheum. He had no idea why I had the spasms but did blood work & diagnosed SJS.

I also went to several neurologists & thankfully one did a nerve biopsy, which came back positive for Small Fiber Neuropathy.

Then my rheum put me on prednisone, which helped stop the spasms, but only while on the med. Next he gave me leflunomide which helped after about 3 months. I went into a bad flare (after having surgery and complications) and worsened so he put me on CellCept which made a night and day difference. This process took several years. Also, I did end up developing some leg weakness but no elevation in CK or any muscle enzymes.

A while later I had surgery again (hip) and my symptoms worsened again and the meds were not working. I didn't want to go on prednisone since I was developing osteopenia. My rheum then started me on IVIG a little over a year ago and I feel like a new person. I don't have any muscle spasms, leg and hand pain, back pain, migraines, etc.... the list goes on!

I'm sure I left a bunch of info out, so just ask & I can fill in gaps.

Basically you need a good rheum who will listen, and a Neuro experienced with doing a biopsy to test for SFN. Have you been tested for any neuropathy?

Also the process of diagnosis is long, so it does take patience!:-) Just keep on keeping on and keep on making appts until you find a Dr who believes you and will help get to the bottom of things!

All best!
Kelley

[Carolina]

Yes, Jeigh.  Read my post of tonight.....   I have extreme muscle and nerve pain, problems with every system of my body, and when I'm in a flare I get very fatigued and depressed.

Sometimes I think I must have a terrible infection, causing my pain.  But it is my own wild and crazy immune system.

I wish I had good news....   We bear each other up and witness the reality which can be almost intolerable.

Fortunately the worst of my most recent flare has passed.  Now I have just ordinary joint and muscle pain. 

I rely on my medications (and wonderful medical team), exercise, weekly support from my therapist, good nutrition, and friends and activities here  in my Senior living Community.  That isn't always enough....of course.  But that is what I rely upon.

Elaine

[meirish]

I just wanted to add that I would not be surprised if many of us are being affected by the weather this winter. I have had such pain in my legs and toes and this is not the norm. I will have pain off and on but lately it is every night.

My middle son who has severe Hashimotos and Chronic fatigue syndrome and I think he said fibromyalgia is having a bad winter with leg pain. Very unusual for men to have these last 2 issues and ended up at Mayo clinic where diagnosis was made. He is on an antidepressant that helps with his fatigue and leg pain but said since it got cold he has been pretty miserable with leg and body pain.

In Minnesota the weather has been cold, cloudy and so darned damp. The humidity is unusually high this winter and one evening where I live the humidity was 99% around 9PM.  That really floored me as if we have a 40-50% humidity we think we are doing pretty well. WE like the humidity to be up a little as it gets so dry here in the winter when we run our furnaces. Take care everyone. meirish

[Carolina]

Gabapentin (neurontin) is the miracle med for Small Fiber Neuropathy.  IT IS FOR NERVE PAIN, which of course IS SFN.

Without it I would be looking for an "exit'.  SFN is called Skin on Fire disease for a reason.  My lips, tongue and eyelids burn, along with needles pressing in the tips of my fingers, AND everything else.

Good luck,

Elaine

[jazzlover]

LDN has helped me immensely with pain .. it also is a mood lifter.

Low Dose Naltrexone.

[eye2dry]

To jazzlover.
How did you come about to get prescription for Naltrexone? I had in past brought it up to my rheumy and he said  " nope, we're not going down that road." My knees kill me the most with my RA. My neighbors rheumy prescribed her CBD for joint pain. I currently take Plaquenil and Meloxicam...also apply Voltaren to my knees

[Linda196]

Eye2dry, does your doctor know you use both meloxicam and Voltaren? It's important for them to know before you use diclofenac topical together with meloxicam. Both of these medications are considered nonsteroidal anti-inflammatory drugs. Since the medication in diclofenac topical may be absorbed from the skin, combining it with meloxicam may increase the risk and/or severity of side effects reported with this class of drugs, including stomach ulcer, fluid retention, high blood pressure, bleeding, and liver or kidney problems

[eye2dry]

Hi Linda.
Yes, my rheumy prescribed them both to me. Interesting you mentioned this bc at my last visit on Dec 30th my labs that day showed my liver enzymes abnormal. First time ever in my life it has happened, suppose to get labs 're done at next appt at end of March.

[Jeigh44]

Wow, thank you for all of the amazing responses to this!  I missed them.  My email isn't notifying me when someone responds. 

Fortunately, after 2 months the pain has seemed to calm down some.  I did go to a neurologist and he did an EMG and the large nerves were all fine.  He said we can test for SFN, but he said he didn't think it was worth it because SFN is common in autoimmune.