Progressive deterioration - what to do?

[CamTi]

I seem to have a progressive form of the condition: over the 3.5 years I have been ill, my pattern is one of every few months experiencing some kind of "over-exertion" causing PEM, from which I don't recover and instead suffer a step drop down in functioning. I am now almost entirely bed bound, though I can tolerate some gentle activity and do basic personal care. It is obviously quite scary having this experience when I'm doing all I can to stay within my limits: all of the recent "over-exertion" has been pretty trivial and/or been precipitated by events over which I have had no control.

I see that the ME Association suggests that such a progressive pattern is unusual except where there has been a lot of stress, infections, poor activity management, or a vitamin deficiency. None of these things applies to me. They further suggest that a clinical review would be appropriate, either by a GP or a secondary specialist service. My GP surgery is at a loss what to do with me, I have rarely spoken to the same GP, and the home visit a GP did six months ago was an event that triggered a to-now permanent loss of function. I am not under a secondary service because they can't/won't see a severe patient. In any case I don't see that medical intervention would do anything other than make me worse.

Does anyone know of any other knowledge on this form of the condition, or is this just another area where we just don't know? Do people update their GPs to have their deterioration on record at least, or just try to manage the best they can on their own and hope for the best?

 

[AknaMontes]

Does anyone know of any other knowledge on this form of the condition, or is this just another area where we just don't know? Do people update their GPs to have their deterioration on record at least, or just try to manage the best they can on their own and hope for the best?

I've seen two ME specialists privately in the UK, and both have seen deteriorating forms of the disease in patients, they could not say why this happens, though one told me that many have the kind of progression I've had over fifty years, the first third fluctuating in remission relapse pattern between mild and severe, the second third more settled at moderate and the remainder deteriorating gradually with a sharp drop into Severe since I caught covid early in the pandemic - it's been stable at this Severe level since. Other than serious rest and effective pacing I don't know of anything that can help. My GP does not call me for an annual review of my ME (just for very mild and well controlled asthma, lol ) so I have a template form summing up my list and level of symptoms and how I'm managing them. I use the same form every year, complete it and email it in annually, so they have an up to date record from me. I don't go into the surgery now unless it's an genuine emergency as I will be weeks or months recovering. The local clinic refuses to see anyone who is Severe or Very Severe, so I go privately to a specialist every 2-3 yrs to get updated advice on supplements and an updated management advice letter for my GP. I don't access any NHS healthcare except for my GP as it's so dangerous here, it's a guaranteed gaslighting and guaranteed deterioration.

 

[Utsikt]

I’m sorry you’re getting worse and worse. I’ve had a similar experience, but it eventually stabilised at bedbound and being able to use the bathroom myself.

I have no idea if it’s related, but my stabilisation didn’t happen until I found some sleep medications that worked and me and my carers figured out how to avoid pretty much all crashes. Before that we had various more or less necessary activities lined up with a lot of time in between, but we still accepted some crashed with the belief that you’ll get back to what it was before eventually.

My GP isn’t really involved, but I reach out when I’ve got questions about new symptoms that might be caused by other things. I can’t think of any medical interventions that would be warranted for my own situations, except for sleep and pain medications, and handling unrelated medical issues.

 

[CamTi]

I've seen two ME specialists privately in the UK, and both have seen deteriorating forms of the disease in patients, they could not say why this happens, though one told me that many have the kind of progression I've had over fifty years, the first third fluctuating in remission relapse pattern between mild and severe, the second third more settled at moderate and the remainder deteriorating gradually with a sharp drop into Severe since I caught covid early in the pandemic - it's been stable at this Severe level since. Other than serious rest and effective pacing I don't know of anything that can help. My GP does not call me for an annual review of my ME (just for very mild and well controlled asthma, lol ) so I have a template form summing up my list and level of symptoms and how I'm managing them. I use the same form every year, complete it and email it in annually, so they have an up to date record from me. I don't go into the surgery now unless it's an genuine emergency as I will be weeks or months recovering. The local clinic refuses to see anyone who is Severe or Very Severe, so I go privately to a specialist every 2-3 yrs to get updated advice on supplements and an updated management advice letter for my GP. I don't access any NHS healthcare except for my GP as it's so dangerous here, it's a guaranteed gaslighting and guaranteed deterioration.

Thanks for your insight. The summary form sounds like a good idea - likewise I want to avoid my GP but this would be a way to keep my status on their records without me worsening for absolutely no benefit.

 

[CamTi]

I’m sorry you’re getting worse and worse. I’ve had a similar experience, but it eventually stabilised at bedbound and being able to use the bathroom myself.

I have no idea if it’s related, but my stabilisation didn’t happen until I found some sleep medications that worked and me and my carers figured out how to avoid pretty much all crashes. Before that we had various more or less necessary activities lined up with a lot of time in between, but we still accepted some crashed with the belief that you’ll get back to what it was before eventually.

My GP isn’t really involved, but I reach out when I’ve got questions about new symptoms that might be caused by other things. I can’t think of any medical interventions that would be warranted for my own situations, except for sleep and pain medications, and handling unrelated medical issues.

Thanks - it's good to get a sense check of the best approach in the circumstances we find ourselves in. According to my wearable, sleep is actually a strength of mine (for all the good it does me!) so I don't think there are any easy wins there, unfortunately.

 

[Utsikt]

Thanks - it's good to get a sense check of the best approach in the circumstances we find ourselves in. According to my wearable, sleep is actually a strength of mine (for all the good it does me!) so I don't think there are any easy wins there, unfortunately.

I barely slept at all, so it was very low hanging fruit. I still don’t sleep well, but it’s enough for me to not get worse from sleep deprivation at least.