Well...it's been an increasingly challenging few months since my last post. I'll apologize in advance for this post rambling around somewhat. I tend to use these to help work out how I feel about things that are complex issues in my life, and I feel like I'm facing another of those "oh crap, now what" chronic pain/disability issues - this time with mobility.
The first hints that things really were starting to deteriorate was when I started having issues with heel pain when lying on my back in bed. The back of my heel where the weight of my foot/leg pushed the heel into the mattress would start to ache - rising to too severe to sleep - within a few minutes of lying down. By mid-late April, I had to use a cushion under my legs to raise them up so that my heels were not touching the bed at all. By early June, I'd started needing to use Lidocaine patches on my feet/back of the heels overnight if I wanted to sleep much at all.
The first lidocaine patch used on my feet followed the first day that I'd felt like I was walking barefoot over wet shell-grit all day. That day has now been followed by several others with similar discomfort under the balls of my feet. My heels are becoming difficult to put weight on - feeling bone-bruised, severely enough that plain sitting in a chair with my feet flat on the floor causes them to become intolerable at times.
I am SO glad I lost weight last year - I don't know how well I'd be coping now if I was still carrying around another ~35kg. I'm going to have to be a lot more strict with diet again than I have been for a few months. The Cymbalta/Duloxetine has increased my sugar-craving which makes that a lot harder. I really cannot afford to put the weight I lost back on - especially since I'm finding it harder to walk now due to the pain. Exercising is becoming harder. At least I can't be dismissed with the "if you just lost some weight you'd feel better" line anymore.
The prospect of losing mobility worries me - so many of the existing mobility aids work by splitting some of your weight-bearing onto your hands, and my hands will not tolerate that. I have found some crutches/walking frames that allow you to put your weight on your forearms instead...those might be usable. As far as walking sticks are concerned, while having one I could fold up and carry in my bag for emergencies now would be useful I simply cannot use them due to hand pain. The pressure on my hands would be too much to tolerate. Likewise, there is no way my hands would ever be able to manage a manual wheelchair. There are some bicycle-seat type scooters that are still foot-propelled, but I've an old coccyx injury that won't let me sit on a bicycle seat for any length of time which means those are not usable either. It kind of reduces my options a lot.
One thing I have noticed is that getting home and putting my sheepskin slippers on feels so kind to my feet. So on Friday I put in an order for a set of sheepskin boots (due to arrive either tomorrow or the next day), with special non-slip soles, extra-soft wool, and leather/waterproof outside to use as every-day wear. This may also help prevent my feet freezing the way they frequently do, which will be a win-win if that happens. In the mean time, I've decided I'll carry my slippers in to work tomorrow, to wear in the office and hopefully reduce the foot pain I experience while sitting at my desk and moving around the office.
I've got a Rheumatologist appointment in a week, but last November he had already reached the end of what he knew in terms of helping deal with the pain. My Neurologist dumped me as soon as he confirmed that I had small fibre neuropathy, saying that there wasn't anything he could do to help me that my pain management specialist couldn't do for me. My next pain management appointment is still a month away. I'm currently hoping that things don't deteriorate too much further before that appointment...
I can't help feeling like I'm staring at a future where I end up in a wheelchair, and fearing that this future will occur in months instead of years. It doesn't help that there is absolutely nothing I can find that I can do or that is available to me in Australia that could help postpone that future. In some countries, treatments such as IVIG infusions would be tried for auto-immune neuropathies, or Benlysta or Rituxan for Sjogren's itself with the side benefit of that reducing the on-going damage from Sjogren's caused neuropathy. None of those are available for use with Sjogren's or small fibre neuropathy in Australia. If the neuropathy had been caused by diabetes, controlling my sugar intake could potentially help - but it is not and I already try to be somewhat careful of sugar intake anyway. I already eat Gluten Free (or at least, Wheat Free which isn't quite the same thing), but while I've had definite reactions to wheat they have not been Coeliac reactions - changing to a gluten free diet won't help me. I was doing a lot of exercise up until the last few months - doing "more" exercise won't help me. I've already lost a lot of weight - losing weight won't help me. All the advice on treating small fibre neuropathy says "treat the underlying cause" - but there isn't an approved treatment for Sjogren's-caused neuropathies that I have been able to find. I wonder if any of the DMARDS (disease modifying anti-rheumatic drugs) such as Methotrexate or Cellcept would be available to use for Sjogren's - or would help at all? I will ask my Rheumy about that...there might be something amongst that class of medications worth trying. Though they all have the side effect of seriously depressing your immune system - hence risking more bacterial/viral infections and increasing the severity of those that you do catch. :(
I've just finished the Chronic Pain course that my Pain Management specialist recommended that I take a look into, to see if there were any additional techniques that I didn't already know about that may help me manage life with chronic pain. The medical research information and statistics were very interesting reading, and I can see that it's a fantastic resource for most people I've spoken to...but there wasn't anything in it that I didn't already do on a daily basis, and in fact I felt it was missing a few key skills that I find extremely valuable so I've sent those back in to the Psychologists running the course to pass on as additional tools to help other people like me.
I know that what my nerves are reporting (misreporting) is nonsense. However, it's not quite the typical "disordered pain system, not representative of real damage" that seems to be present in many chronic pain conditions (according to the pain course). It is the end result of an uncontrolled disease process that is causing on-going nerve damage, where the damaged nerves themselves are misfiring and generating the pain. The nerves involved do not affect movement - I'm not going to wake up finding that I can't move my legs or anything like that. But they are the nerves that report temperature/pain, and they have a priority interrupt to the "fight or flight" response that makes it hard to ignore the reported pain for more than a few minutes at a time. It does help having something to concentrate on - I've always found losing myself in something that makes me think (whether reading, gaming, programming, etc) has helped me to lose track of my physical being for a little while at least. But dealing with that kind of pain is exhausting, and there is a limit beyond which it becomes impossible to continue to ignore. That limit is what will cost me my mobility if we cannot get the pain back under control, or reduce the progression of the damage that is causing the pain in the first place.