CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Thanks Living physio was ok but just concentrated on my lower back which is great but doesn't help my wrists / knees so a bit confused about that.

Yeah have looked at pacing not mastered it yet did way too much yesterday

Maybe they're working up to it or something? That's a bit weird though

Pacing is the key, and what Sally Burch calls pre-emptive rest.
sallyjustme.blogspot.co.uk/

I'm still here. First day at uni and I felt awful after lunch really tired and achey. I'm shattered just now too feeling very down about how I'm going to cope.

I'm now on tramadol 6 X 50mg, paracetamol 8 X 500mg and pregabalin 2 X 150mg. Don't know if it's working though

CAn anyone give me a bit of advice on what to say when someone - who clearly has mental health issues as well - thinks their fibromyalgia is a muscular pain syndrome that should only be treated by a rheumatologist?

I've had fibromyalgia (or something similar) in two episodes, 2002-8 and 2011-2013. At the time my father wrote me off as being a lazy malingerer with nothing wrong with me other than being an academic failure. My father doesn't really do sympathy, empathy or any form of engagement with anything other than 1950s "it's all in your body and otherwise you're a loony or a lying malingerer" type medicine.

Now his GP is suggesting fibromyalgia as an explanation for his (my father's) muscle aches. Father of course is aggressively asking for appointments with rheumatologists, monoclonal antibody drugs, and telling the GP that any other description of the aetiology of fm is utter bollocks - so will not be seen by gastroenterologists, pain doctors, CBT therapists, psychotherapists, physiotherapists, etc - despite having very clear, present issues with both gastro stuff (has had what's looked like IBS for decades) and mental health and coping style (depression, feelings of resentment and rejection and aggression, over the fact i've got pregnant and thus my primary concern in future will not be sorting out my father's babyish/aggressive complete-absence-of-coping style), and saying that exercise makes him feel better (but he wouldn't do it if someone other than a "proper doctor" told him to).

I sound unsymapthetic. i'm not - I do know what this feels like, but - having engaged myself with fm as a complex syndrome of varying and in many cases unknown aetiology - I am a bit fed up with my father's arrogance, aggression and insistence that he knows everything about something like fm, when a few years ago he denied it even existed, and now he clearly doesn't know a lot about it.

Thus - is there anything i can say that might make him engage with a broader picture than rheumatologists and monoclonal antibodies?
For reference - he's a scientist in a different field (as am I) - so generally he refuses to engage with what he describes as pseudoscience - and what I might describe as "science that has been invented since he was at university in the 1950s"....

I actually would want him to see a rheumatologist, a diagnosis from them is seen as worth more than one from a GP for one thing. On top of that it's a diagnosis of exclusion, so actually excluding other things is important. He also might take it better coming from rheumatology. I would always, without exception, tell someone whose GP has tried to diagnose them with fibromyalgia to ask for a referral to rheumatology.

I don't think that's the answer you wanted, sorry.

on the contrary that's useful to know, thanks. I am definitely not against the rheum idea, just think that there needs to be more to it..

Hi, how are people doing? I'm afraid getting through my few weeks at work was a complete train wreck, and I ended up taking 1.5 weeks off as soon as I could. Back now and trying not to panic at the need to make up all the stuff I slacked on before plus the load facing me now.

Gastro appointment went okay, but he wants to see me again and warned me that if I don't eat I'll lose weight and make sure I keep eating. Unfortunately, I think he's got the wrong end of the stick. I've put on a stone in the last month by basically not paying attention and having loads of treats, and I'm sure I'll balloon back up if I'm not careful. But at least something appears to have happened, and I can eat a normal amount of food without gaining, as opposed to before last year when I ate a near starvation diet and still gained. And he wants to see me again, but I don't think I'm going to try to gain weight for him, or even to keep this stone on that I gained by eating sweets and icecream.

Also had my fatigue specialist re-referral. They were supposed to investigate POTS, but the fellow seemed really not up on it, doing the 'poor man's tilt test' but neglecting to take my pulse (which is the thing that's meant to change!) and not even wanting my home records. I got a very bad vibe off the whole thing, with him starting by saying he'd read my records (which will say they decided I had depression two years ago) and then not even looking at my home BP/HR report and saying that I could "keep it" - I explained I had generated the print out and had an electronic version, so he could put the print out in my records. It made me feel like I was being dismissed out of hand again. I'm just so exhausted of the whole thing and feel like all this visiting of physicians is taking a big toll of my available energy, plus making me question myself (maybe this is normal life? but then why can other people do things like go to shops on the weekend and I can't?) and feel bad. I don't think I'm going to have the ability to pursue this anymore if they brush me off again.

murm I know exactly what you mean, every so often I wonder if this could be normal. I don't think it can be because other people say they're tired and it turns out they've actually done STUFF whereas I'm always trying to find the energy seemingly just to exist . It's a fleeting thought.

I went through years of avoiding medical appointments because I never seem to come out of one feeling better, pretty much always much worse! Your gastro seems to have had the wrong end of the stick for a while now! I'm still not convinced he's the right dr for you. I think moose is probably best placed in helping you sort out the POTS diagnosis, maybe we need to send her a message asking her to come back!

I've got a new neurologist and she's possibly the nicest dr I've ever met. She made me have another MRI though. 😒

Hello all,

It'd be nice to talk to some others who can relate to what I am going through.

I've never had much energy and always been a v tired person, but in the last three years it has snowballed. My knees started to be painful and ache like crazy, and in the last year it has spread to nearly every part of my body.

My life is now extremely limited and for ideally most of the time I am sitting or laying down in a nightie. Can't even tolerate pyjamas sometimes as the waistband presses slightly on my hips and they ache a lot.

Even writing this has made my hands and fingers achey and tired.

Rheumatologist told me I need to exercise 'and one day could do a triathlon' which is so laughable I don't know where to start. I certainly don't just give up moving around, I try to do as much housework as poss and I have a 5 yo to look after, but I have to take maximum strength cocodamol to be able to do so.

I went for a wander around a small lake yesterday and last night at dinner I had to lay on the floor as I was aching so much.

I feel like my life is over and buggered forever. I don't know what to do. Rheumatologist says it 'might be' ME or fibro but has discharged me as she can't help further. I don't know whether to ask for a different specialist or what.

Just wanted to talk to others who can relate. Any advice?

HI marvin, sorry you're here - read yesterday and didn't have energy to reply. Don't really today but didn't want to just leave you hanging!

No great advice other than just keep pushing. I'm afraid I'm at a point where I'm just sick of going to people, but I'm pretty sure I know what I have (POTS, not sure if its with CFS/ME or not, although the latter's what I've been I could be diagnosed with) and have found a variety of coping techniques.

You can also ask if there is any fatigue nurse or ME support in your area? I saw our CFS nurse without being formally diagnosed, and he was the one who offerred me a diagnosis.

I will try and find that out, thank you.

Would you mind telling me your coping techniques?

www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/

Interesting comments from Peter Tatchell

another article about the Naviaux research

Sorry to take so long to reply, marvin. The problem with threads like these is we're all so tired!

I have a bunch of very strict rules surrounding my activities - I will do one 'thing' every other weekend (and unfortunately a 'thing' might be as simple as going to store or out to eat). I have arranged with work to do flex time and take one afternoon off - I have afternoon naps 3x a week, that day plus Sat and Sun.

I also do some things particularly related to my POTS: I lie when possible, I fidgit, I eat a high-salt diet.

A lot of it has been experimentation - for example, I find sitting on the floor for 10 minutes absolutely exhausting (probably POTS related), but am okay if I squat and bounce around. I am still working on things, and have recently had to take morning naps on the weekends too, which is distressing, as I really don't do much other than work.

Can I join? EDSer here, currently trying to find out which type (lots of Classical features but severe joint involvement too)

I was having physio with a specialist hypermobility specialist but she referred me to pain management physio instead who doesn't seem to know much about hypermobility (during my assessment he seemed surprised I was there because "I have a great range of movement in all of my joints"... and then he saw my knees bend backwards and he seemed to realise, but I'm not holding out much hope for physio, I need strengthening and core stability exercises but he's talking about improving my flexibility which is the last thing I need.

Car braked suddenly the other day and I ended up in A&E. First x-ray showed dislocated shoulder, second showed it back in place. Since then it's sliding in and out whenever it feels like it.

I hate this condition. I'm 22 and I feel much, much older. Hypermobility physio said hip & knee replacements might be needed as early as 40 :(

Sorry that's all very me me me, just needed somewhere to rant!

Ovaries I have classical EDS with severe joint involvement too. I'm 26 (27 next week!) and a wheelchair user for all basically all distances outside the house. I've just finished my 3rd round of hydrotherapy with the next goal being land physio core and muscle building exercises-I have 6 weekly reviews with the specialist rheumatology physio and weekly sessions with a physio assistant. Is there someone like that at your hospital? Increased flexibility is the last thing you want (!)
Really I just want to keep hold of the mobility I have for as long I can. I know what you mean about the hip/knee replacements. I'm trying to stay off the "EDS surgery merry-go-round" as long as possible. Most of my EDS friends have had at least one surgery so I know I'm very lucky. I probably could gain some joint stability through surgery but I don't think it's worth the risk, iyswim. Do you use supports for your knees and hips? Have you tried taping your shoulder or using a tubigrip? It might be worth immobilising it for a bit.

Thanks for replying unweaved. I was seeing the specialist rheumatology physio but she referred me on to pain management because the physio wasn't helping much. I lost a job last year because I subluxated my knee - it was a temporary contract and they'd told me they were keeping me on until the subluxation happened.

I use supports for knees, elbows and wrists. Currently in a sling for my shoulder but I think I need better support for it once I can take it out. I made the mistake of taking tramadol and thinking "oh yes this is much better" and using my arm... tramadol wore off and it feels like it's about to come out completely. I'm my own worst enemy!

Been a long time since I've had the energy to look at this thread I'm afraid. Just had my Neuro results today - 'we have not detected any neurological condition which might be responsible for Ginny's chronic fatigue'...

I'm stuck in that awkward place in which you're glad you don't have something life-limiting/'serious', but gutted that I'm still on the differential diagnosis path to nowhere.

As a plus side, I've had a lot of pain relief from the pregabalin I was finally prescribed (apparently seizing in work is an effective way of demonstrating that your pain really is severe ) roll on the next dose...

Hello! Just joining this thread and not read the whole thing (screen time limits)

I'm 3 years into very variable CFS. So far managed to keep working ptime, but not sure how long I can go on. Off for a few weeks at the moment and trying to keep to my daily tick list - good nutrition, short walk, short gentle yoga, resting etc. Even being off symptoms are up and down from day to day. Anyway - any and all tips welcome. Seem to have kept on even keel mentally, after accepting this as the new normal. I feel like having a t shirt that says 'I used to walk up hills you know! For miles!' Now its a bloody miracle if I can walk to school. All the cab drivers know me. Luckily they are fairly cheap and usually plentiful here.

Anyone had tests with Dr Myhill? Have been contemplating but v expensive and not sure where will they lead if you get a positive result? NHS tests have not turned anything up except B12 issue which we have known about for some time. Am taking on board a lot of advice from her website. I try to keep on top of what research is going on via blogs and NHS list of research going on worldwide - but that again is screen time.

Also - any tips for talking to Occ Health? Thinking of asking to see them after I go back to work. Think I need to reduce hours/days further or take some proper time off, like 6 months. Feel rather cabin feverish though, without work - which I do enjoy in the main.

Cake and spoons to all of you labouring under this particular weather x

Only advice I can think of is keep your heart rate down and your Vitamin D levels up.
I'm just back from the Bristol MissingMillions demo - a great meetup

I'm here and plodding on... my back is very bad, especially at night so I'm not sleeping at all well plus I have a thumping head and achy teeth (conclusion is I'm gritting/grinding my teeth due to pain at night)... not fun.

Oh Ginny. I know exactly what you mean, you hope for something to just show up even though you don't want whatever it is the docs are looking for, just so you can say I have proof it is all real and there (maybe) treatment available. It sucks doesn't it? I'm glad the Pregbalin is helping even if you went a dramatic way of proving you needed it!

Marvin you need to find your level of pacing so your baseline, that is what you can do each day that doesn't make things worse then figure out how often you can do an extra (could be going out for coffee, visiting a friend, seeing GP etc) and work on from that. So for example, with the housework there might be a base level of x amount each day ie keep kitchen clean, wash 1 load of clothes, prepare simple food and then you might find once a week you can cope with an extra bigger job such as hoover or clean the bathroom. Once you've managed that for a short while, you might try and add in a second bigger job but carefully placed in the middle of big job in week 1 and big job in week 2 and so on. Does that make sense? It's the same with exercise - for example i started off with 1 short walk a day and I didn't always manage that walk but I tried to do that walk at least every other day. I gradually worked up to doing that walk once a day most days. So I then gradually added a little extra distance (so instead of turning right at point x and walking home, I walked round the front of the house and turned left - literally a few steps) and kept up with that until that was comfortable but.. if I found it too much, I went back to the original distance for a day or so and then tried again. So just gradual build up. I won't be running a marathon - it's taken me 2 years to get up to 2 1/2 mile walks a day! I'm finding now that I have days where I really struggle still with just a half mile walk, it's a real effort so I'm still figuring out what I do next and if I can iyswim. There is a nice diagram on ability circles which I found quite helpful. I will see if I can find it and post it here for you.

I've got the last of my pain group sessions this week, a final follow up. I'm only going because the people I've kept in touch which have suggested we go for a coffee afterwards. I haven't personally found the sessions a great deal of help. I'd have found it more helpful if I'd been referred right at the start (by the GP I saw originally) rather than several years down the line (by the locum who saw me once) and my now regular GP said right from when she met me 'I don't think you'll find it useful' - she was right! Ah well, at least I can say I have done it and "am working with the medical profession" ~really need a rolleye emoticon~

Hi everyone - I have dropped in before but forced myself back to work and had no energy left for anything. (Serial namechanger - this is in honour of how I feel about CFS just now...) Now off after the 3rd virus in 2 months has left me exhausted. Only managing 6-7 hours out of bed - I work 4 days a week so goodness knows how I get back to that for next week.
Doing a lot of taking stock. Find I can read ok (lying down) but not taking it in so well or able to re explain it.

Also having POTS symptoms for the first time. GP appt is not for nearly 2 weeks - seems ages - not that she'll change much but the validation would be helpful. Also have Crohn's and an ileostomy - not helping with fatigue!!

Reading some of the great links and pondering how we cope if I cut my hours and can I really get back to work next week and can we afford relationship counselling and... all over the place. Will try and be supportive and stay about this time. I feel like this is the most frustrating thing in the world...

Marvin took me a while but I've found the ability circles diagram that I mentioned in my last post (hope that works!). I found it an easy way for me to see how to pace myself, some people prefer the spoon theory analogy, it's just what works for you. Hope it helps.