joint pain and peripheral neuropathy

[kaiaua48]

Hi,

My wife is in the process of being diagnosed with ME/CFS now, her Rheumatologist has said that will be the likely outcome after she has seen another specialist to confirm it. She has been on a terrible ride for the last two years, losing her job, confined to her room most of the time, with bad fatigue, PEM, joint pain and lots of neuropathic symptoms: bound feet, tight scalp, Raynauds, numbness and tingling, twitching muscles etc.

Her illness came on with joint pain, first in both knees, like smashing glass, which moved to her elbows, and then to her hands and feet. The joint pain is significant and constant, and gets worse with exercise. Her knuckles turn red, but there is no swelling. Initially our GP thought it was RA, but that was dismissed due to lack of blood test confirmation and no swelling. She has been treated as UCTD for the last two years. Which means she has taken a lot of strong immunosuppressives: Methotrexate, Azathioprine, Leflunomide, as well as anti-malarials and daily prednisone. She is still on the prednisone and Hydroxychloroquine.

The prednisone does help with her daily condition, but none of the other meds appear to have helped, although she was allergic to the Methotrexate just as it appeared to be helping, and she took another medication called Quinacrine which helped significantly for a time, it meant she could work for a few hours a day again when she was on it. Quinacrine is an anti-malarial drug used in WW2 that has a stimulant aspect to it, so it is good for lupus sufferers who also have fatigue. It has occured to me that it could be a useful drug in ME/CFS as it treats underlying autoimmune conditions, and it is also a stimulant that treats fatigue. Unfortunately she was allergic to it, with skin peeling all over her body, so had to stop. It is a pretty serious allergic reaction which can have long term repercussions so it is very important to stop if you get lesions or skin peeling.

Anyway, I guess I'm wondering if her story sounds like it fits with ME/CFS, she doesn't have OI, or any muscle pain, her pain is exclusively in her joints from the elbows down, and the knees down. She certainly has the symptoms to be diagnosed as ME/CFS, but we wonder with the joint pain, and her initial diagnosis and treatments whether this is what she has, or what exactly it is. We're wondering if other people have a story similar to hers.

thanks.

 

[Wolfcub]

I am so sorry your wife is suffering so badly like this, and has had allergic reactions to drugs which may have helped otherwise.

This may have been ruled out or may not be the case at all, but has she been tested for Lyme disease?

 

[kaiaua48]

I am so sorry your wife is suffering so badly like this, and has had allergic reactions to drugs which may have helped otherwise.

This may have been ruled out or may not be the case at all, but has she been tested for Lyme disease?

Thanks for your reply. We live in NZ and there isn't Lyme disease in NZ, she's originally from the UK but hasn't left here in 25 years, so I don't think it can be that. They haven't tested though.

 

[pattismith]

Hello @kaiaua48
welcome to PR.

Does your wife has any significant rise in classic inflammatory blood markers?

In ME/CFS, classic markers are usually normal, but there is evidence for some inflammatory process.
We still don't know if the ME condition is driven by auto-immune or mechanical or infectious or mixed roots, but in the case of your wife, she seems to respond to drugs against auto-immunity.

 

[Moof]

So sorry to hear your wife's story, @kaiaua48, it sounds as if she's been having a nightmare time of it.

Although some people with ME do have nasty joint symptoms, I'm not sure I've heard anyone describe that specific pattern before. (People of PR, please do correct me if I'm wrong!)

Can I just ask whether your wife's been tested for coeliac disease? This is an allergy to gluten, which can present in unexpected ways such as arthritis and fatigue, with few or or even no digestive symptoms.

It's important to know that coeliac testing doesn't work well if you're already on a gluten-free diet. I was tested twice whilst on that diet, and neither of the health professionals doing the test bothered to mention it! Mine turned out to be something else, but if I'd had coeliac, diagnosis would have taken much longer than it should have done.

 

[Diwi9]

@kaiaua48 - Has your wife had a skin biopsy to determine if she has small fiber neuropathy? I would also throw Sjogren's Syndrome into the mix, there are some good talks about how it can be very difficult to diagnose as the typical diagnostic auto-antibodies are often not present until years into the illness.

The critical symptom for ME/CFS is post-exertional malaise, meaning a worsening of all symptoms occurring about 24-48 hours after an activity? In most of us, PEM means we have an extreme reduction in functioning and are reduced to bed. Recovery from PEM is not commiserate with the level of energy expended during the activity as PEM can last for days (although for some weeks and even months).

Also, since she doesn't have orthostatic issues, does she report cognitive problems?

FWIW - Yes, I have joint pain, muscle spasms, fasciluations, and neuropathy. My arms, shoulders, and upper back are most affected, although I can get strange intermittent joint pain in other regions without swelling. The pain can be pretty extreme and then suddenly dissipate. However, my elbows constantly flare, especially when I'm in PEM.

 

[kaiaua48]

Hello @kaiaua48
welcome to PR.

Does your wife has any significant rise in classic inflammatory blood markers?

In ME/CFS, classic markers are usually normal, but there is evidence for some inflammatory process.
We still don't know if the ME condition is driven by auto-immune or mechanical or infectious or mixed roots, but in the case of your wife, she seems to respond to drugs against auto-immunity.

thanks. She has had periods of CRP levels being high, but they are largely normal, as is her ESR. Her blood results haven't shown much over the longterm, some weakly positive antibody results that go negative again, I think in the end the lack of much showing in the blood, combined with her lack of response to the immunosuppressives (apart from the methotrexate, but she became allergic before the response could be certain), is leading them to diagnose ME/CFS.

 

[kaiaua48]

So sorry to hear your wife's story, @kaiaua48, it sounds as if she's been having a nightmare time of it.

Although some people with ME do have nasty joint symptoms, I'm not sure I've heard anyone describe that specific pattern before. (People of PR, please do correct me if I'm wrong!)

Can I just ask whether your wife's been tested for coeliac disease? This is an allergy to gluten, which can present in unexpected ways such as arthritis and fatigue, with few or or even no digestive symptoms.

It's important to know that coeliac testing doesn't work well if you're already on a gluten-free diet. I was tested twice whilst on that diet, and neither of the health professionals doing the test bothered to mention it! Mine turned out to be something else, but if I'd had coeliac, diagnosis would have taken much longer than it should have done.

thanks for your reply. Yes, she got tested quite early on for coeliac, and went on a gluten-free diet for six months to see if it would help too, but it didn't make any difference.

 

[kaiaua48]

@kaiaua48 - Has your wife had a skin biopsy to determine if she has small fiber neuropathy? I would also throw Sjogren's Syndrome into the mix, there are some good talks about how it can be very difficult to diagnose as the typical diagnostic auto-antibodies are often not present until years into the illness.

The critical symptom for ME/CFS is post-exertional malaise, meaning a worsening of all symptoms occurring about 24-48 hours after an activity? In most of us, PEM means we have an extreme reduction in functioning and are reduced to bed. Recovery from PEM is not commiserate with the level of energy expended during the activity as PEM can last for days (although for some weeks and even months).

Also, since she doesn't have orthostatic issues, does she report cognitive problems?

FWIW - Yes, I have joint pain, muscle spasms, fasciluations, and neuropathy. My arms, shoulders, and upper back are most affected, although I can get strange intermittent joint pain in other regions without swelling. The pain can be pretty extreme and then suddenly dissipate. However, my elbows constantly flare, especially when I'm in PEM.

thanks for that, and I'm sorry to hear about your symptoms. Yes, she had cognitive problems from very early on, inability to find words, and to think, I have learnt to finish her sentences. If she does something out of the ordinary, say go to our daughter's hockey game to watch it, she'll feel the effects of it the next day, although to be fair her energy levels are always very low, and she will be immediately wiped out after doing anything. It's hard to say whether it's delayed by 24 hours, or how long it continues for as she's always at a roughly very low level. She has a bit of energy in the mornings, but the afternoons and evenings are a write-off.

She presented with the joint pains in her knees, elbows, fingers and feet 2 years ago, and the pain has been constant in those ever since. It doesn't shift around, and she doesn't really get it anywhere else, brief periods in her hips and shoulders. I think it's because of her presentation with the joint pains they've been treating her as having a connective tissue disease, but two years later with minimal blood test results to back up the diagnosis, and non-response to some of the drugs, they're rethinking it. We are currently waiting to see a neurologist so I will ask them about a biopsy for small fiber neuropathy, the Rheumatologist has been testing her for things like vasculitis and Sjogrens, but so far, there haven't been any positive blood test results.

 

[Diwi9]

@kaiaua48 - Your wife certainly sounds ME/CFS, but this illness is difficult at times because it is heterogeneous and there are illnesses that have symptom overlap. It sounds like your wife has interested doctors and in my completely unprofessional opinion, she seems to fit a lot of autoimmune criteria. Some patients with ME/CFS also have autoimmune profiles. These patients are the ones who tend to improve off of treatments like intravenous immunoglobulin (IVIG) and sometimes even rituximab (B cell depletion therapy).

I should note that of late, there has also been a lot of buzz about craniocervical instability being the cause of ME/CFS symptoms in some of us. It might be something you want to look into if you don't find diagnostic answers, especially if your wife has hypermobility in her joints.

 

[2Cor.12:19]

@kaiaua48 - I'm so sorry to hear about your wife. It sounds like she's getting good care under knowledgeable doctors. Coming to grips with a new ME/CFS diagnosis was hard for all of us and for our families. I've had moderate-to severe ME for 33 years.

The disease waxes, wanes, and can morph over time. As some mentioned, it's common to acquire other autoimmune conditions along the way. Many of us have had times (months or years) of great improvement, and there are even some who actually gained complete remission. For the majority, there IS still some sort of life with it - just a very different one than we had expected. Life in the SLOW LANE. Make sure she gets plenty of moral support - this is a great forum to be involved with.

Have you considered low-dose naltrexone for the pain? It's been a life saver for me and many others with ME/CFS and other autoimmune diseases that cause pain and inflammation.