Desperate for advice
 

Hi all, things have become so desperate that I don't want to carry on anymore. I have a small son so I will keep on but I just cannot cope with not knowing or understanding what is happening and the rate of progression. The exceptional sfn pain is one thing, and it's severe from head to toe, face, spine, legs, feet, lips, nose, everywhere. But, what has progressed terribly and taken this to a level of terror are problems with muscle energy and being able to move parts of my body. My body is tiny having shrunken significantly despite eating a lot. Muscle mass has basically disappeared everywhere, most prominently legs, hips, thighs and upper arms. What's happened on top of the shrivelling body size is a pain and fatigue like no other deep within all my muscles to the extent that I cannot move sometimes over the last week. I can move but the mental strength I often have to muster to move my body, put one leg in front of another and raise my arms during a flare of this new progressing issue is terrifying. MRI and nerve conduction are showing nothing beyond Sfn so I'm only officially diagnosed with sfn. (Also have ankylosing spondylitis). My neuro accepts my explanation of full body symptoms but any explanation or diagnosis beyond the Sfn is limited. Sfn pain is now at a point where every part of me feels like hell. Paraesthesia in every part of my entire body without exception is possibly worse than pain and drives me to insanity. Even the nerves within my teeth and nasal passage are agonising me. I've had abnormal heart rhythms through the roof this week whilst the other symptoms have ramped up.
The neuro can't feel what I feel so won't take me beyond what we have already tried - two loads of ivig and 5 day steroid infusion. He won't try cellcept as he is worried about making me more sick. (With all this nerve and rheumatic stuff happening I am already systemically sick, feeling unwell and ill to the core of my body. I see his point. But, I feel like this is going to kill me or paralyse me from the neck down in a short space of time and I can't stop trying everything I can. I have a small son who needs me. I am his primary carer on my own and I cannot bear just sitting here becoming increasingly disabled whilst he watches.
Whatever I have is really serious and I just want to keep trying everything. Please, if anyone has any suggestions as to what the hell to pursue next I would really value your input.
The last letter from a Neuromuscular specialist said that MRI and nerve conduction are clear! So I'm kind of feeling on my own now. He suggested muscle biopsy but felt the likelihood of showing anything was small. I feel instinctively within my gut that my time is running out. Please, I am desperate for some advice as to what route to pursue next

I certainly understand your frustration...it was 12 YEARS before I had a proper diagnosis for my collection of terrifying symptoms. All my doctors recognized the seriousness of my conditions (that tests showed positive), but they had no idea what was causing everything, so no clue as how to treat me.

I felt the same way you do...wanting to keep trying anything/everything until an answer could be found. So that being said, if it were me, I would pursue the biopsy. You & I have discussed this before...and how the biopsy CAN show damage that and MRI would not.

I would also try the Cellcept. I had short term success with that helping nerve pain/symptoms, but I did have to stop due to an infection. It was NOT from the medication. I had a large hematoma form from my blood thinner injections. It got so big (grapefruit size) that the mass became infected (which would have likely happened even for someone not on an immune suppressor). So I had to stop the Cellcept...but I did have 3 months of reduced symptoms before the hematoma got infected. It is certainly worth a try for you. Yes, you can get sick from it ,but you're sick because you're NOT being treated, so maybe you should roll the dice and try. If things start to get worse ,then you can stop and there are remedies for it (like IVIG to quickly boost the immune system---if you get seriously sick from a weakened immune system).

The IVIG trial you had wasn't long enough to show whether it would work. There is NO documentation that says only 2 infusions is the normal course of treatment. The typical course is at least 6 months. It takes time to reorganize the immune system...not something that can happen in 2 months. So another opinion on IVIG would be worth while at this point...someone experienced in prescribing IVIG for immune based neuropathy. Do you know how much they were giving you?? Neuropathy dosing is 2 grams/kilogram of weight. Is this what you were getting? if not, then this is also a factor in your brief trial of IVIG.

Have you had any success with symptomatic relief...like Neurontin, Lyrica, or antidepressants used for nerve pain? What about pain meds? I can't remember all your history, so not sure what you've tried and haven't tried.

Try to stay positive. I know it's hard, but attitude is very important in this fight. Frankly, it's the only reason I'm still here today, I believe.

JoannaP79 - My heart aches for you because I know what you're going through. I could have written this post. I have extreme nerve pain, burning and paresthesia every place you have described, including my face, nose and teeth. Most recently I've experienced severe pain shooting down both my arms and through the carpal tunnel area into my hands and fingers. I too am terrified that I'm moving from just horrific pain to becoming paralyzed. I don't know if the pain is what is incapacitating me or if there's now a truly neuromuscular manifestation of some sort and that my condition is progressing. It's so horrendous that last weekend I just sat rocking and whimpering. I barely hang in there, just like you. My strength is found in my children's faces. Also, like you, there's very little in the way of a true diagnosis, except post-viral central sensitization. I say in my head daily that I can't believe anyone has to live like this. I have very little in the way of advice except to find medications that can at least take the edge off the pain. I live in a state where medical marijuana has been approved, and I intend on seeking this out next. It's very easy to drift into a very dark place having to cope every day. I force myself to stay busy the best I can - working, taking care of my children, maintaining my house, visiting with friends here and there, though my standard in every area of life has been greatly diminished. I struggle with resentment and grief, especially in that this is invisible to anyone around me. So I'll end this where I started - that's my heart aches for you. Consider this a hug:)

Just :hug:. Thinking of you and sending healing love...

I'm so sorry JoannaP79, SFN and not knowing why is just brutal. I have it full body as well so I understand, I really do! I truly hope you find something that helps give you some quality to your life. Perhaps pursuing a longer trial of IVIG would be worth while...I do know several people that have benefited from the treatments.

Big Hug.....
Cliffman

Hi En Bloc, thank you, I very much value your replies to my posts. Yes I feel you are right and I am going to have to pursue the biopsy as a next step. If it somehow shows nothing I will just cross that bridge then.
I couldn't tell you the quantity of ivig per infusion. The problem unfortunately was that I did have a pain flare in new places afterwards so we agreed to hold off. Accessing more ivig will be very difficult as insurance won't cover more and the NHS won't use it for Sfn only. I don't know how it may differ if a biopsy shows denervation of the muscles.
I'm going to phone the secretary tomorrow to get the ball in motion for the muscle biopsy. I really don't want to have this procedure but know I kind of have to.
As much as I wouldn't wish this on you, knowing that you understand how hard this road is does make me feel much less alone.
I stay upbeat around those around me, but I especially my son. As time goes on my hope has been diminished and that has had the greatest impact on my mental well being.
Meds wise I was on 3600 gaba and the odd ttamadol. The gaba had caused such severe sedation that I successfully managed to reduce it to 1800 a day. I have days where it doesn't make any difference and others where I feel that this has worsened the pain I feel. I cannot cope with the sedation as my son is 4 and I have little help.
I've emailed neuro Secretary to ask about next step from this. Tried a few antidepressants which I could not tolerate at all.

I can only say that I understand how you feel. You are not alone. This is so terrifying and is extremely difficult to live with. Everything said in response is also how I feel. I've been like this for almost 3 years and still hoping for answers and treatment or some light at the end of the tunnel to the end in the physical pain and symptoms.

Thank you for your lovely message. You said some things that rang so true with me. I now spend most days talking to myself about the fact I have acquired the most bizarre misunderstood and painful thing you could have. And like you I am now crippled with resentment. I spend time with friends and get out alot with my son. For that I'm grateful and it lifts my spirits alot. But, I have to present a front that is significantly far removed from the truth. No one truly understands what's happening or even what I have. I have learnt it is best to keep it away from relationships with others as best I can. But, that makes me feel so disconnected from everyone I know. I offload to a counsellor now so I can keep this from damaging friendships. When I see everyone living a life like I had and just thinking about and doing normal things I can feel really sad and resentful inside.
I stopped working as I don't know how I'd manage it, but I'm desperate for something. Financial and housing stress have made things significantly worse over the past few months.
I'm sorry you have to suffer it in every place too. And the not knowing. I have heard of pain centralization but it doesn't really explain a thing.
Thank you again for your message

Thank you Littlepaw

Thank you cliffman! Brutal is one of the best descriptions for this thing. I think managing the pain a bit better would change how I feel a bit. I've been trying to avoid the next step up but need something. Again I'm sorry you also have to deal with this too