Hello, out there…
I visited this forum many years ago and have been ticking along with a predictably and slowly deteriorating condition (diagnosis changed from RRMS to SPMS around 18 months ago), nothing dramatic or noteworthy, just needing a dose of acceptance and patience with myself, so I have not been a regular visitor here.
I’m in a situation now in which I’m not sure what to do, if anything can be done… I’d love to hear if anyone has had any similar experience and has any pearls of wisdom to offer.
A little background:
I’ve had lots of hard work going on of late, recently wrapping up on a big project that was long (5 years!) and very demanding, if not super stressful. followed by some quite intense and prolonged personal stress for about 4 months, combined with ordinary, consistently low-level demanding part-time work. Just carried on carrying on, as I tend to do, and then seem to have crumpled into a bit of a heap. I identified it to myself and professionals as likely to be exhaustion from the long/hard slog combined with the more acute stress. GP & neuro specialist nurse both did some simple tests, found nothing explanatory and suggested that rest & some time off work are likely to lead to some improvement.
Seems like all of my usual symptoms are multiplied, especially fatigue, muscle weakness and poor balance. A bit like I’ve spent a few hours in a hot bath or a sauna. Can really only walk a few steps at the moment, whereas I was going 2-300 metres back in May. Have been more prone to falls. Had an phase of general trouble with vision unlike a typical optic neuritis relapse, more just not seeing clearly or maybe not making sense of visual information. That seems quite a bit better now. Much worse problems with concentration and attention, normally that’s all ok. And I’m sleeping and sleeping and sleeping. At first I couldn’t use my weaker leg to climb steps at all, and just had to drag it up each step after the strong one. That’s a bit better now too, but not much change in the fatigue, balance and weakness.
What I’ve tried:
I’ve been off work & diligently resting for around 3 months now, with not much sign of improvement. Doctor from Occ Health at work offering ongoing review and encouragement that he hopes things will improve in time. Haven’t been able to get earlier than routine appt with Neuro consultant. He has suggested Gabapentin for spasticity (which doesn’t feel like my biggest trouble at the moment) GP is very kind and good with the sick notes, but not offering any new ideas, Everyone at work very nice and supportive about it (after all, I have carried on carrying on in spite of MS fluctuations, worked with the employer to figure out ways of managing heat in offices last summer, difficulty getting across the car park, etc). But now, embarking on my 4th month of sick notes, I am becoming a bit disheartened & impatient to find a way back to near where I was at the end of May. I’ve carried on with my healthy vegan diet and LDN, but not on any other drugs/treatment at the moment. Cooling down temperatures outside and cool baths haven’t helped. Have put a pause on physio exercises, due to fatigue, though I suspect that could be counterproductive. Had a B12 injection last month that has seemed to make no difference. I’ve been offered anti-depressants, but on balance, I am fairly sure I’m not clinically depressed, but I am having some counselling about how upsetting it all feels.
Can you help?
I wondered if anyone has had any similar, relatively sudden experience of deterioration. and particularly if anyone has found a way to drag themselves back out of a deep hole?
I’d be really grateful to hear stories from people who have found a way forward from a deep slump.
Thanks very much for taking the time to read all this,