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Hitting a wall. Any helpful experiences or advice?

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.

Symptoms:

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,

Best wishes,

Lara

bumping you back to the top

Hi Lara Sorry to hear that you’re having such a bad time of things. I can’t really think of any thing very helpful I’m afraid but just a couple of questions. Firstly, do you have an MS nurse? They really are worth their weight in gold! If you don’t see one it might be worth asking your GP if it’s possible to refer youto one… Secondly, have you had you urine checked for UTI? Maybe I’m stating the obvious but I wish someone had told this years ago, I would have save myself a few “relapses” if I’d known the havoc an undiagnosed UTI can cause! Think of you and sending cyber hugs. Teddie

Sorry, just re read your post and saw that you have a neuro specialist nurse! Brains not running on all cylinders today!

Sorry you feel so poorly, sounds like one hell of a relapse that’s taken its toll on both body and mind. Haven’t had much experience as just recently diagnosed as SPMS but I do know you must listen to your body, sleep and try not to worry too much. I am sure you will get back to where you want to be x x had a big relapse in May/June which I still feel I am recovering from. Take the sick notes, build up your health each day, accept you are a bit run down and need recovery time x x x I know it’s hard but try and be kind to youself for a bit x

stacey x x

Hi Lara

What about HBO? I dont suggest this with any personal experience or much knowledge, nor do I have any reason to be confident of its efficacy, but only because you havent already mentioned it, and it is something I believe the MS Society still offers from centres at a very reasonable price.

Hi Lara

I went through the same emotions as you before I retired throuh ill health 18 months ago at the age of 51. Broke my heart but I know now it was the right thing to do.

People tried to understand at work and tried their best to make it easier for me to carry on. Occ Health even provided me with ana ir cond machine as the heat in the office made my symptoms unbearable at times. So bad that I would have to be driven home as my sight was so bad I couldn’t drive myself home.

Have you considered ill health retirement or has it been offered to you.

I know I was off sick for 6 months before they brougt the subject up.

Hope you get help soon.

Shazzie x

Hello again & thanks for replies and kind wishes.

I’ve been tested for UTI and anything the lab could look for in my blood too. It’s a sensible suggestion, though, so thanks. I haven’t tried HBO, am I understanding - is it hyperbaric oxygen? Or do you mean gritty American TV series? I’ve definitely been working through the box sets of the Sopranos from the sofa, but will look into the oxygen therapy too. I’m getting to the ‘try anything’ point. Heading off for spiritual healing this weekend and refexology later this evening. Yes, I’m trying to be kind to myself, working on the acceptance front above anything else: ‘for now, this is just how it is’. Practicing everyday mindfulness, etc. I realise I’ve pushed beyond my real capacity for a long time, but I am a bit terrier-like by temperament. I wonder if it’s as common a characteristic with MS as it is with ME? The universe seems to be sending me a message about my limits and need for rest. Apparently I am not singularly able to keep going at any cost!

Thanks to you all for your thoughts.

Wishing you all wellness,

Lara

Yes Hyperbaric Oxygen - that is the one.

Hello :slight_smile: I’m sorry to hear you’re having a relapse or worsening at the moment. I, and everyone, will get how you feel. I’ve started a relapse, about 3 weeks and I can feel a slowing down. Symptoms slowly building up. It’s quite depressing when it kicks in. I had to find a way to stop feeling so low. After spending time thinking about why I felt like I did, I realised I was stressing out over how bad it would get. Then I started thinking ’ well, I got through the last one, and that was a baddie, so I’ll get through this’.

its not easy and we all deal with it differently, but that’s what I keep in mind when I feel low. It’s accepting that, for now, things are going to be difficult. I hope you start to feel better in yourself soon and we are all here for you xxxx

Hello kind souls…

In your experience, does this sound like a relapse? It is not like any distinct relapses I’ve had before. Yes, I would get the general tiredness, but combined with a clear sensory pattern like optic neuritis or wierd sensations in my feet, etc. I’ve thought this feels different and less obvious what it is, but if I thought it was a bad relapse I’d be more confident about some degree of eventual recovery. So, does it resemble any relapse you’ve had and then bounced back from? Should I be trying steroids or consider DMDs? I’ve never had either before, as I’ve taken every previous relapse as something that will sort itself out eventually, and usually they start to recover in a month or so, but this is so generalised and so enduring!

Thanks again for your good and helpful words,

Lara

Hi Lara, you said general tiredness in the above post but then in the first mention only being able to walk a few steps. To me it sounds like a relapse but I must admit I haven’t had much experience, I didn’t know I was having relapses in the past when I developed an ms hug once and another when I had to be hospitalised with catheter when not being able to pass urine during early pregnancy. I though they were isolated incidents - my doc said an infection of the intercostal muscles and then a UTI for the 2nd. I had optic neuritis 10 years ago and I didn’t get it during these ‘episods’ no-one ever ‘joined the dots’ so to speak!!! I only v recently got diagnosed with a 2nd batch of optic neuritis, very bad clonus and hand tremors. The fatigue you describe sounds like the relapse I had but I don’t think you ‘need’ the optic neuritis etched to make it feel valid x ask the doc or your ms nurse - I haven’t met mine yet!!! Not sure about steroids I thought I would of benefitted from them in May but did not ask as I had not yet been diagnosed. I felt like I needed ‘building up’ again and this is an experience I have had in the past though not to the extent I experienced it so recently x x

hope you you feel better soon

stacey x x x