30 years of ME, struggling to cope please help

Michelle Henshaw

New Member
Hi, I am Michelle, it is a long time since I have been on a forum but I am struggling to deal with ME and need to know what I can do and how many others are like me. I feel like I am losing my mind! Brief history, I was 22 when I had a throat infection and never really recovered. I wasn't particularly ill with the infection, didn't stay off work. After though I just struggled, over the next 2 years went from full-time to 4 days, 3, 2 then work gave me an ultimatum of full time again or leave! Specialist said leave. Well I have gradually continued to deteriorate over the last 30 years, I am mainly housebound and use a wheelchair if I do get out, have done for 20 odd years. I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

I now live in France, I also believe I have POTS so thought maybe treating that could help, but I hate seeing doctors as they are always dismissive and angry because I use a wheelchair. Stupidly I thought a POTS specialist might be more understanding, he wasn't! Saw him in July, he was also angry that I take Dihydrocodeine, obviously I must be addicted! He said it is highly unusal to have CFS for 30 years (he was annoyed when I disagreed and told him I hate the term CFS and that I was diagnosed with ME) The appointment caused a 2 month long crash and really messed with my head as he basically said whilst I probably have POTS my inactivity & wheelchair use has caused total cardiac deconditioning, this despite only having a cursory examination. My resting heart rate is only 50, but standing even for a few minutes has my HR over 120, of course he would not believe my resting HR was so low because it didn't go lower than 90 when I was in the appointment for obvious reasons, I was v upset by him, angry and close to tears, and he only had me lie semi prone on the couch for a few minutes whilst examining me before doing a 10 minute stand test. Even just sitting in the wheelchair without my legs raised has my HR way up. I have been using a HRM for years so I know what my resting HR is, but he didn't like that I used that either. Is this all my own fault? He has suggested lots of tests but I never want to see him again.

I am drowning in lost years, every day I do so little and it feels that my life is pointless, my husband has gradually taken over all the household chores, so I am not needed for anything now, and mainly just go from bed to the settee and accomplish very little on a daily basis. I always feel ill and fluey and doing anything feels like a gargantuan effort, but obviously when I am in a crash then I feel even more ill in every way and I am just in survival mode. On those extremely rare days when I don't feel quite so hideously ill, I am eager to do things, but I just can't sustain anything and always crash, even if I just sit outside for too long. Even just being too happy usually causes a crash. My crashes often hit full on 2 or 3 days later so I think I have gotten away with things, and then boom!

Dihydrocodeine can help me push through the symptoms a little, but obviously its only masking the symptoms and it mainly only just takes the edge off the pain and the fluey feelings. Losing both my parents in the last few years hasn't helped, my Dad to Covid last year was traumatic. Should I be trying harder? Why can't I push through anymore ever? I just have no push or fight left in me. We don't spend time with friends or family anymore as it is just too difficult, makes me ill and it is just easier not to try, as no one understands I really can't cope with more than 15 minutes of visits. I want to get some life back but it just feels impossible. I now also have osteoarthritis and osteopenia, again an angry doctor took one look at my wheelchair and ME diagnosis and told me its my own fault at my age (52) because I am so inactive.

How many of you have been ill this long and have deteriorated. The ME Association prognosis says it is unusual to continue to deteriorate, is that true? I just wish there was a definitive diagnostic test so I would know if I am genuinely ill or have I somehow done this to myself like Doctors keep telling me I have? I feel sick at the thought I am responsible for ruining my life and my husbands, I never imagined I would still be ill, never mind more ill, 30 years later! Thanks for reading this, sorry it is so long and also I am not sure if I have put it in the right section.
 

Wayne

Well-Known Member
I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

I feel sick at the thought I am responsible for ruining my life and my husbands

Hi @Michelle Henshaw -- I read your whole story, which is unfortunately so similar to many other stories I've read. Not too much that I can offer on practical advice to possibly somehow get better. But from what you say about trying so many treatments over so many years, it sure sounds to me like you did your best to be proactive about finding solutions for yourself, and in turn your husband as well.

Given your persistent efforts over so many years, I would encourage you to lay to rest the notion that you have somehow ruined your life, or your husbands. Don't let the unfounded disrespect from clueless doctors color how your look at your life, or your courageous efforts to do the best you could for yourself.

I can see that from cyberspace how heroic your efforts have been, even though your doctor couldn't see it right in front of his eyes. I guess he wasn't trained to do that. How's that for trying to put the most generous twist on his fairly deplorable behavior. :)
 

Creekside

Active Member
I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

Finding something that works is a matter of luck. In my 20+ years I have found three treatments that did make a big improvement in my quality of life ... and two were already in my kitchen, and I just had to notice that they worked. One was cumin (cuminum cyminum), which blocked my physically-induced PEM (but not the cognitively-induced PEM) 100%, and after ~2 years of that, it seems to have permanently cured that symptom. Unfortunately, no one else has reported major benefits from cumin, and only a few have reported minor benefits.

Iodine also provided a significant reduction in my ME symptoms, and each dose lasted a consistent 21 days. T2 (3-5 diiodothyronine) had exactly the same effect, so the iodine was probably boosting endogenous T2 production. T4 and T3 supplements did not provide that effect.

LDN was the third treatment, and that successfully blocked my neuropathic pain, but didn't affect other ME symptoms. After a year or so on that, I no longer had those pains, so I didn't need the LDN. Sadly, the pains returned when a new food sensitivity developed recently, but LDN is helping with that again.

I discovered several other treatments what worked for one or more symptoms for a period of weeks or months. Several worked well, but only for the first few doses, and then stopped working ever again.

So, it is possible to find treatments that work. I consider finding three very effective ones in 20+ years to be quite lucky. I've heard of other people who tried many more treatments and didn't get lucky with any of them. I see treatments for ME as similar to a lottery: there's only a tiny chance of winning, but you can increase the chances by buying lots of tickets, and you can guarantee you won't ever win by never buying a ticket.


I've encountered useless and hostile doctors too. I gave up one the medical system. If you've had all the possible tests for alternative diseases, I don't see any point in continuing, except to ask one for a prescription for a treatment that you decide is worth trying. No doctor knows the mechanism of ME, so any treatment they propose is only a guess. You can guess at treatments too, without the hassle of going to see a hostile doctor.

Should I be trying harder? Why can't I push through anymore ever? I just have no push or fight left in me.

ME changes over time. There are things that I could do before that I don't have the push to do now. Another factor may be that experience has convinced me that trying to push harder isn't going to help. It's not your personal failure, it's just the disease at work. You can't 'push harder' if the 'push harder' part of your brain isn't functioning properly. I believe that ME is primarily a neurological disorder, with certain brain cells not functioning as they should (which cells to which degree depends on the individual), so that affects the 'push harder' part too.

as no one understands I really can't cope with more than 15 minutes of visits.

I do understand that. I find socializing takes a lot of cognitive processing, and I can't do that for long. Back when I still had PEM, sometimes only a few minutes of chatting was enough to trigger PEM. If your experience is that socializing makes your ME worse (or triggers PEM), then you need to avoid it. I suggested a t-shirt slogan for people who get PEM from socializing: "Talking to you makes me sick". Sad, but true.

I feel sick at the thought I am responsible for ruining my life and my husbands,

No, you didn't ruin things; ME did. It's no different from cancer, Alzheimer's, or any other disease that we have no choice in. No one told me how to avoid developing ME. If you have deteriorated physically because of the physical limitations of ME, that's ME's fault too. ME doesn't let most of us do the physical activities we should do to stay fully healthy.

I never imagined I would still be ill, never mind more ill, 30 years later!

Yah, back when this started in 2001, I certainly didn't imagine that I'd still be suffering 20+ years later. Back then I was sure that if I just found the right doctor, or the right supplement, I'd get my life back. Still waiting ...

Of course, there were also the periods when I didn't imagine still suffering 20+ years later because I thought I'd give into suicide. I came close a few times. Then I discovered that niacin was inducing strong suicidal moods, so I minimized niacin in my diet, which helped. I also learned that the suicide prevention services had no reluctance to tell a suicidal patient "Sorry can't help you." My guess is that they only help if you fit into one of the easy-to-solve categories, such as relationship problems, job loss, etc. "Chronic disease? Sorry, can't help you."

Yes, here I still am, suffering still, hoping to find another treatment that works, and waiting for researchers to find something useful.

In my 20+ years of ME, I did have several abrupt temporary full remissions, which is snapping from the full ME state to the full non-ME state ... and unfortunately back to full ME again. However, that convinced me that ME is treatable, and that it might even be fully treatable in a matter of hours. Take the right pill, and maybe an hour later you'd snap completely out of the ME state, and could go back to your normal life. Some normal exercise might be needed to recover full physical fitness.

It is possible that someone is going to either discover the mechanism of ME, or stumble across a treatment that mysteriously works, so keep hanging on, and live within the limits that ME places on you.
 

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