DO YOU KNOW ANYONE WHO HAS RECOVERED FROM FIBRO/CFS/ME? AM DESPERATE

[WishToBeWell]

Long term MNr but nc. Even here I act as if I am 'well' iykwim as it feels like last place left for me to do that, andI know sometimes I help people which then helps me as makes me feel less uselesss. I am exhausted 24/7 but exhausted doesnt even begin to explain it. Is bone dead. From wakeing I wake up am in intense deep pain in bones joints muscles, just everywhere.

Has got way worse recent weeks without me noticing deteriration IYKWIM and only realised how bad yesterday when hungry but could not move to make food. I didn't even thought it could get no worse

I cant even wash my own hair or prepare food. In a very rational way, if I didn't have DC who I know it would crucify, I would exercise right to self-determination as truly this is is a living hell but that is not and never will be an option for me given would desstroy them and deep down I do sorta hope it will all just go and be better. But alternative of being like this forever just terrifies me as it is no life. Even nice things aren't nice given the amount of effort they take and the pain involved. I mask everything as best can but is very obvious to those who see me that am ill anyway since hardly move and that too eats me up with guilt, that DC see me so weak and useless. DC1 when hugging me gently pointed out I need a shower. I could have broken down on the spot.

No, do not have support, no, GP just uselss, yes, had every test under sun for things like thyroid adrenal but all 'normal' so now have diagnoses been dreading of Fibromyalgia and Chronic Fatigue. Yes have partner but don't live together and he is currently away having addiction treatment anyway (was ill before we met so not his issues have made me ill iykwim).

Do you know anyone who has ever recovered from these as I am desperate looking for help and hope but can't see any. Only thing have read success stories of is Mickel therapy but also see lots of people saying its a scam.

Any advice or storie of recovery would help me more than you could know . Thank you for reading

Fibromyalgia is a diagnosis of exclusion- so is cfs. It's a catch all term for "we can see you're suffering but we have no idea what's wrong."

Excellent advice above about vitamin D and postural tachycardia- get both checked.

What are you being treated with? Too many people with fibromyalgia are just given painkillers (opioids particularly) when these can make things worse in the long run. Treatments such as lyrica are much better and there's a phase three trial at the moment for a similar compound.

I know my Vitamin D levels when they were tested, as were iron, and thyroid. Was tested for everything under the sun by GP worried she was missing something. Even had CT scan for headaches in case she missed a brain tumour. Have had a year of tests before GP concluding well it must be CFS then.

I suppose her book publisher would be very unhappy with a confession that actually it hasn't made a scrap of difference eating healthily . So she'd have to keep promoting it regardless. Actually I really hope it does work. I don't want to be medicated to the eyeballs if I can avoid it.

I'm sorry Im really confusedd - who is ella?

Thank you all that have possted, will take me a while to take all in.

Did have a very severe Vit D defiency but was given 20,000iu pw to fix it.

Have Tramadol and diclufenic for pain.

Haven't touched alcohol for over 3 months.

I was diagnosed with CFS late last year and because I simply couldn't accept this was my life forever more I asked for more blood tests. It has been a battle with my GP which I was ill equipped to cope with, but I have come back as either low or deficient in:

B12
Iron
Vitamin D
Folate

Now on iron supplements, vit d supplements, folic acid and waiting for b12 supplements to arrive.

My thyroid is also struggling and with the help of posters on here and other websites I finally persuaded my dr to allow me a therapeutic trial of levothyroxine.

Never, ever accept your doctor simply telling you that your results are normal! Always ask for the ranges as what the NHS classes as normal can still make some people feel very unwell indeed. The only issue my doctor identified was low iron and was initially very dismissive of my other concerns. If I hadn't been determined and proactive about my health, none of these issues would have been addressed or treated.

I am too exhausted to battle against my doctor at the moment but I'm also experiencing tachycardia when standing which has been picked up by a 24 hour ECG. This has also been left as no further action and I will have to battle again when I feel able to get it addressed.

My faith in the NHS is at an all time low. I dread to think how many people don't have the resilience to push for treatment or are unaware that they even need to. Sadly, with this condition you have to be very aware of your own health and do your own research, which is a terrible conundrum when one of the main difficulties is head fog!

Hope this makes sense - currently having a spate of bad days.

OP, I was where you are for a couple of years, and am now improving slowly - exactly as Wagglebee describes.

I collected a LOT of recovery stories when I was first ill. So many people knew someone who had a CFS/ME diagnosis, or they'd had it themselves. Many had recovered enough to live and work normally, just keeping a careful eye on not overdoing things. One had got back their superfit, mountain-climbing level of health.

Others had recovered to a plateau that wasn't 100%, but was still much higher than their lowest point.

Also, YY to the fact that CFS/ME is just a catch-all. You may have something currently diagnosable (like Vit D deficiency as mentioned), and as research progresses, more conditions will be identified.

CFSKate

To anyone with ME thinking of suicide, please if possible just try to bear it for another 2/3 years until phase 3 drug trial is complete.

I understand why anyone would befeel suicidal but for me no matter how horrrific this gets, and it is horrific, a trapped living hell watchig the world go by as you sink into decline more, it is not and never would be an option for me simply becuase of what it would wreak upon my DC. No matter how uselesss I am to them (and I am useless to them) having to deal with parent suicide would be life changing devastating MH for them.

What is phase 3 drug trial Kate?

I found Rhodiola Rosea very good when I was suffering from exhaustion. Get the Viridian brand with the highest percentage of rosavins. I don't know if it would help cfs, but it certainly got me back on track with whatever it was that I had some years back. I can only describe it as permanent exhaustion.

Me. I had it when I was 19-24 - 18 months very severe. Disabled badge, higher rate of allowance, my fairly old fashioned GP who didn't believe in sick notes kept signing me off for months at a time.

Went back to uni when I was 25 - did a masters and have worked full time since then in demanding jobs (now 42) Also generally been pretty fit since - started floating in a pool and now have done loads of different things.

Main lasting symptom is my body struggles to handle temperature change and I get cold very easily. Otherwise no issues.

dotdotdotmustdash Fri 04-Mar-16 16:43:39
I was misdiagnosed with Fibro a few years ago. I didn't believe the diagnosis, despite it coming from a Rheumatologist, a Gp and a Physiotherapist. I did some research into my symptoms (very weak muscles, fatigue and bone pain) and asked for my Vit D levels to be checked. This was done (grudgingly I might add) and came back as 'undetectable'

YY - that was what mine was.

Dot Are you better now? Do you think it could be as simple as just getting my vitamin D back to normal?

Tbh I hadn't even heard of fibromyalgia until I happened to read an article and realised that the symptom list pretty much tallied with what I had been experiencing. Fortunately the GP agreed with me and did the referral. Don't know where I would have been now if I hadn't known about it. Still at sea I suppose

I am better now, never fully healthy, but I also had surgery to remove a tumour from my thyroid gland when I was 21 and I have been on thyroxine for the last 17 years. I've never felt well since then. I also have autoantibodies for a liver condition which is monitored, but has been stable. I am overweight and have been since my mid-20s but I was slim as child and young woman and I am constantly tired.

The bone pain and muscle weakness was definitely from the Vit D deficiency because those were crippling before I started on the Vit d supplements. They definitely improved steadily over the following year. I continue to take them daily so it doesn't happen again.

Sadly, with this condition you have to be very aware of your own health and do your own research, which is a terrible conundrum when one of the main difficulties is head fog!

YY to ^^^^^ That and pain and exhaustion and trying to be own advocate

Bookish

That sounds like me. How did you get weel? And when you were sick did you ever believe you would get well?

Sorrry for all the questions but just more despearate than you know

please keep posting, you are helping me

We do know how desperate. I'm finding the answers helpful too.

Me! I recovered.

I was diagnosed with CFS about 5 years ago....life was pretty awful. 2DC I could do v little with. DH would take them for days out and I'd be stuck at home. All the usual symptoms - brain fog, pains, sore throats, awful sleep, the usual.

Had CBT therapy, pacing etc. Had some minor improvement, but really thought this was my lot for life....

Then 3 years ago I did the Lightning Process - 3 short days, and then the following weekend I went swimming with the kids and haven't looked back. Now have a full busy life. Went back to working full time, do regular exercise, run around after the kids and live a lovely life.

You've probably heard about it op, there's lots of negativity online about it but my experience was fantastic and it worked for me and the others on the course.

PM me if you want more background.

Hope you find something that works for you. I know how awful it can be

I have been 95 to 100 percent for a good while now.

4 years ago I couldn't make a cup of tea and lay 23.5 hours per day in a dark silent room.

I got better through using optimum health clinic.

OP things will get better. Have you read Dr David Hill's work.he made a lot of sense to me.

Life can and will get better. You can do it.

I have had ME for 4 years now. Recent improvements from seeing a specialist OT who prescribed amitriptyline (helps with deeper more restorative sleep and pain relief) and trialling Vit B 12 injections. Also, reducing activity massively means I can generally cope - but have to be very careful and nap daily. I spend a fortune getting things done for me (all laundry and cleaning) ,have acupuncture and osteopathy, don't eat various things, use a mobility scooter, etc.

A friend cured himself with very very careful pacing and gradually increasing his activity levels. Now back in FT work.

I had CFS from age 27-32. I did Mickel Therapy actually with the man himself via email as I was in NZ at the time and I was better after about three months. I still get patches of insomnia and sore throats but other than that I consider myself cured. It seriously changed my life.

Yes, me. I lost my vocabulary and couldn't walk across a room when it was at its worst, end of 2009. I had CBT and talking therapy alongside amitryptiline (I think), with very gradual activity increase, but I did have a doctor who understood the condition as much as they could. I remember sobbing when she told me things would get worse before they got better, because I didn't see how they could, but she was right. I improved from mid-2010 but it's taken years for me to be able to be fully active (and I am now very, very active). If I push my limits rather than increasing slowly I get slight symptoms again so god knows whether this is something that will hang over me for life. I certainly don't have the memory or multi-tasking capacity that I used to.

Try getting second opinions if your doctor is being crap and enlist your support network because you can't do this alone, especially with kids. It's a real illness that lacks any research because we're all too bloody knackered to fundraise.

Please don't do the bloody Lightning Process. For every story of recovery there must be dozens where people have had no change.

M.E shouldn't be that must of a diagnosis of exclusion these days. In order to have it you need to have post-exertional malaise. Lots of people get misdiagnosed by doctors who don't know about this when they just have general fatigue, though I'm sure that can still be very bad.

Op the paleo diet has helped me a little. As has pacing. I absolutely hate living with M.E but there is so, so much research going on that although there's not much of a cure now I think there will be.

I think cfsKate was referring to the Rituximab trials, which are looking v promising.

Do look into whether you have POTS too as so many with M.E do and there is potentially good treatment for that. I've experienced some improvements for being diagnoses and getting medication. I take vitamin D and magnesium but they don't seem to help.

"I certainly don't have the memory or multitasking ability that I used to"

This. It never came back properly. When I get really tired I still get brain fog. I can't get words and sentences out straight. I just try to laugh. I know when I've overdone it and I still suffer a bit for it. When I'm ill like this week, I have a throat virus, I come home and sleep for 12 hours. But it passes.

Sod em indeed our Blanche. I don't think anyone would guess I had been so I'll. I had septicaemia about 9 years ago too so I must be a tough cookie.

Op don't give up hope. It's amazing how things can change.

I don't think I have POTS as I am ok when I stand up (ok meaning it's not any worse or better than normal, still agony and exhausting but no wobbles or palpitations). I do have massive muscles jerks and twitches in no particular order and just random. ENG confirmed presence of 'Acquired Myopathy'.

To whatever lovely poster who mentioned it, I have zero supprt network as I have just gradually isolated more and more over the past decade. Was a thread on here the other day whre the OP was a 'friend' of someone with CFS and she posted on AIBU about being fed up of it all being about that. I wanted to climb through the screen and punch the self absorbed bitch who is lucky enough to still be walking and talking and having a bloody life. But that reminds me of the remaining couple of people who were left in my life, they just got bored of me being ill and never being able to make anything and just went. Its just me and my mind and my useless body

Op you need a plan of recovery.
You have to fully commit to rest, meditation, eating right, having whatever routine you can manage, pacing really strictly. Find a recovery plan that resonates - be it lightning process, Mickel, gupta's programme, optimum health clinic or whatever floats your boat.
You can do it. Once you start you'll feel better that you're in control of cfs not the other way round.