Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Hi everyone.

I have just managed a 10 minute walk! I have not been out of the house for about 6 weeks. I am so pleased with myself! I stayed on the level and my chest did not get tight this time, although I have to walk concentrating on the floor otherwise I am veering all over the place, I am so unsteady, hope people don't think that I am drunk, lol. I am trying to eat better too and take regular walks, last time I did that, I found that I was sleeping better too.

I have applied for a part time office job, not sure how I will explain being off for 2 years ill if I get an interview though and obviously the lack of a reference for that time period is going to be a major problem, I am just going to be honest and if they don't want me, then I am going to see about doing some volunteer work once a week and keeping up with my walks and start going swimming too. I need to keep busy, all my children are grown up and I am very isolated at the moment which is not helping my mental health either.

Hope everyone is doing ok today, my legs will probably be aching terribly later after my walk.

Also not very coherent today, but in short i only made progress when i found a gp who would listen and give me the time, and i went armed with a concise list based on a diary kept over a few months of all my symptoms. It took 30 years to get to that point - before all my symptoms were dealt with as separate entities. It did at least mean that i'd had already had pretty much everything else ruled out when i went in with my list.

Re periods, i haven't come across periods stopping altogether as a symptom (though i'm far from an expert), but i certainly do have very dysfunctional periods, and the severity of my other symptoms vary according to where i am in my cycle - i'm always at my worst around ovulation. I'm fairly certain there is something awry with my hormone levels, but nothing that is picked up by standard gp tests.

It is difficult with me/cfs/fm as there is no test to confirm you have it, so it can only be diagnosed based on your symptoms. If there are other possible reasons for your symptoms, like life events causing your depression, then the gp will want to rule those out first. Ad's and painkillers can of course make you very lethargic, as can depression on its own. Would it be possible to try i different type of ad or pain relief and see if there's any improvement?

Sorry you are having such a struggle. A lot of us have experienced a startling lack of sympathy from those around us. I remember my mum telling me 'get out of bed you lazy cow' when i just couldn't. It hurts in more ways than one.

That was to ladybird btw!

Hi all, does anyone on here have a child with M.E. My son is 15 he was diagnosed 5 years ago, he spends most of time in bed he is at part time school but has'nt managed a day this term. Cognitive therapy has been advised, has anyone had this and did it help? Any advice is welcome, thanks

thanks Waggle it's hard not having support in RL all I get is pull your self together, make yourself do it, but it's not that easy.
velvet the article that I read said it can effect/affect your hormones oh and it causes your body to not be able to regulate your temperature so I get overheated which I also put down to the menopause!!!
it's so difficult to diagnose, yes it could be the depression but I've had it for 4 yrs now it's only been the last 2 ish years that I've felt like this. it could also be the meds that I'm on so I need to see about changing them. I just hate hate hate feeling like this I used to hate being in doors and now I can't go out
just want a magic wand and get my life back.
sorry for whinging but having a bad day I've got a workman coming tomorrow and a)haven't got the energy to deal with him and b)he'll see my tip of a house and judge me.

lady - it might worth investigating changing your medications. My DH did a trial of changing to some antidepressants that were meant to be helpful for people with CFS. They actually resulted in him having a lot more energy! Unfortuantely, they also resulted in a return full force of his depression, so he had to switch back. But for some people, I understand it helps both elements.

didi there is at least one Mum of a CFS patient on the thread, perhaps more - if you read back you should find her. And hopefully she will pop by.

murmur that's interesting, I'd love to have some energy, though I'll have to try and get the energy together to get to the Drs! it's like a vicious circle isn't it.

I want to knowledge my cognitive function goes to shit the more I do.
I swept the kitchen and dining room today and then tried to make some toast. Trapped my finger in a drawer, cut my thumb, dropped a full glass of water and then walked into a door and bruised my cheekbone. i'm so wonky that I can't even manage to have a shower though I'm trying to rest to get the energy up. I want to wash my hair. Also just realised I've forgotten to brush my teeth. Wtf. Feeling very, very down this week actually. Really struggling to keep going. I am trying my very hardest and it's not getting me anywhere. I look like absolute shit. Acne has broken out despite me trying my best to eat healthily, use expensive products. Month old corpses look better than I do right now. I can't cope with it anymore. I just want to give up.

Sounds like lot of us are having bad weeks this week. I'm having a rough time as a result of pushing through the weekend to make sure my dd had a good birthday. Managed to walk from bench to bench, verrry slowly, all around the Sealife Centre on Sunday, for her treat, but I am seriously paying for it now.

I couldn't get up to take my dd to school this morning, between the exhaustion, the pain, the nausea and spinning room/head I hadn't a hope. Fortunately dh could do it this morning. I slept until 1.30, then had to prepare myself for picking her up and lie down again for three quarters of an hour so I could walk there.

Also had to order a food shop and a couple of other bits online this afternoon and it took until after the third order and ranting every time about next day delivery not actually being 'next-day' for me to realise that it is actually Tuesday. I was convinced it was Monday and they were all ripping me off by saying they could only deliver on Wednesday. I can barely remember yesterday at all, although from what I'm told I managed to do both school runs and cook the evening meal.

I tried to read back but haven't been able to retain much. So my apologies for that. Someone mentioned hormones I think. All my symptoms are much worse around ovulation and the week before and first couple of days of my period. According to my doctor this is very common.

I would say it's worth at least looking into different medications if there are alternatives. My DM was so poorly on Statins, for example, that she could barely move from the pain and exhaustion - and she's made of pretty strong stuff, having already lived with major, chronic pain for most of her life. The symptoms went away almost overnight when she stopped them. It just goes to show how badly some of these medicines can affect us.

Ds2 seems a lot better and is back at school. I think dehydration was the biggest part of his symptoms, but I also think he's probably developing migraines. I got him to drink lots and lots of water, eat some salted nuts and have another sleep on Friday afternoon and he woke up feeling so much better, pretty much back to normal. I haven't checked his heart rate again, because I don't want him to worry about it. Definitely need to keep a close eye on him though.

I'm on second day of period and it's really heavy. There is a connection definitely.

I've been taking salt tablets and it's helping with theccobstantvthursr. Still drink 3-4 litres a day but that's better than 6. D-ribose is helping with brain fog.

Constant thirst

Today was one of my better days. I'm going to hide this thread now as I'm just moaning into space.

Wagglebees, sorry you've had a horrible day. Hope things look up a bit as your period tales off... :)

Oh waggle . Your posts aren't just going into space - there will be many reading and identifying with how you feel, but feeling powerless to offer much advice, only empathy.

It's quite apparent that most of us haven't really found an answer to dealing with our illness. I appreciated the advice upthread about mitochondrial illness and how supplementing with micronutrients may help, but i for one can't afford the tests to find what i may be lacking, or afford all the supplements even if i knew.

I've been experimenting with using one or two supplements at a time over the years and nothing has really made a difference. D-ribose definitely has helped though - with the fog to an extent, but also with muscle fatigue. I can stand for longer now before the burning pain starts since taking it, and i do think i have a little more energy.

I think it helps having this place to vent how bad you're feeling, even if there isn't much we can practicably do to help each other. Just knowing that there are others who really understand how hard it is means a lot as, like has been said, it can be hard to find that in real life, even among those who love us.

Hugs, Waggle

Sorry I've not been a supportive poster lately, just struggling at the moment! Ironically this morning I was too unwell to take DCs to their (routine) appts at the doctor's. Argh.

Sorry so many of us our struggling at the moment. Waggle I hope you are having a less awful day today. Velvet I agree - I did not have tests either, but have found D-ribose helpful, and magnesium (Epsom salts in the bath weekly and they are cheapish and vit D ( GP did D test through NHS and found me to be mildly deficient). D- ribose is costly but I see it as essential now.
I thought I would report back some good news - the MRI (of head and neck) I had (several months ago) to rule out MS - well ruled it out. It did show a bulging disc in my neck - but that is no surprise (I have pain consistent with that). I presume I will not need a neurology appointment now. I have not heard anything from the hospital but had to see the GP about something else and asked if he had heard how my MRI went. So now I know!

Waggle I hope you haven't hidden the thread. You aren't moaning at all. We all understand, we're in the same boat and do try to be supportive, but as you will know, sometimes your head just won't produce the right words. I actually deleted a post to you twice after my other one last night, because I couldn't string an appropriate sentence together to say what I wanted. So sorry, wish I'd posted something, anything now, just to let you know I was there and do care.

I only tend to pop in here once a day, if that when I'm having a bad time, as I find being online wears me out and when I do come on here, I'm sometimes too brain-fogged to read back more than a post or two, so even if I don't see or respond your posts straight away, please don't think I don't care.

maggiso good news that they've ruled out MS. Is there anything they can do about the the bulging disc? I had one neurologist that told me MS looked likely based on my MRI and another that told me my MRI was normal. MS was ruled out anyway though via LP, Visual, Evoked and Somatasory (sp?) potentials and something else which I've completely forgotten.

I have spent today stupidly comparing myself to other people that have beaten pots via exercise/diet and determination and berating myself for not doing the same and allowing myself to get deconditioned. Just been perusing recumbent and desk exercise bikes on Amazon, as I think that's what I'm going to start with once I've had my TTT and follow-up. Then I read stories of people that are much more badly affected than me and decided I am a wimp.

I really want to do something, anything to move forwards this year. First off, driving test - assuming I don't get any worse and am still well enough to drive, then I want at least two stone off before we go to our annual music festival in May. Much as I miss our VW, I soooo love our vintage caravan, as I don't think I'd be able to go at all without that level of space/comfort. I missed quite a few bands last year, having to stay at the caravan and rest, but still had such a great time, so lovely to be away from the house and leave all the crap behind.

Oh, waggle, don't go! Moaning is what this thread is for. One issue here is that we're all so fatigued it is sometimes hard to reply to things. I'm having trouble processing stuff now. Back and work and have been ill since my return, and all my energy is going into looking a real human being at the office. DH and DD are sick too, and so I'm also taking care of them, but pretty badly. DD has had ham and cheese on crackers (plus some fruit) for supper several times this week, as I couldn't manage anything else

Waggle I hope you are OK. I find it hard to know what to say sometimes, especially when things are going badly. What ever I write seems lame.
Moose its a couple of years since I was assumed to have POTs and at first I felt much the same - annoyed with myself and unsure how to get better function. Floor based Pilates is what I do and I have gradually got somewhat better, little by little. I think I've mentioned our camper before (ours is not a VW) but it is old!

hi how's everyone feeling today pleasewaggledont go. I can't get onto mn until late hours.
I was going to agree with you I'm so clumsy I knock things over bump into things step on toes I'm constantly covered in bruises and with the dustpan and brush in my hand. and some days I can't remember the previous day! is that brain fog?

Moose, I have not yet seen a neurologist, only the radiologists report, which does not mention any brain lesions so I assume that's OK. I do not know if that means someone at the hospital (neuro or muscoskeletal )has actually ruled out MS.I was referred about 18 months ago and its taken ages to get as far as an MRI. I wonder if I should pursue further - or if just having CFS (with POTs) explains my odd symptoms. I was supposed to go to the back clinic but have not been sent a follow up appointment. Its all very frustrating. I will try and chase it up.
Waggle my coordination is a bit off too - I think it goes with the illness.

Sounds like brain fog ladybird - or doing too much I suppose.

maggiso No brain lesions is a great sign.

My MRIs show unspecified lesions. I'm booked in for a lumbar puncture next Wednesday

maggiso that's pretty much what I plan to do, although I am looking into a recumbent exercise bike to begin with. I can't get on with Pilates or Yoga. Many, many ... many years ago I used to do something called Callanetics, which was very similar to Pilates, but these days I just can't seem to get on with it. My Mum has private Pilates lessons and uses a reformer. It's been fantastic for helping build her muscles and core strength, which has helped relieve some of her chronic pain, via joint support.

I do enjoy floor exercises like planks etc though, so plan to use those to rebuild my core. Hard to believe that in 2011/12 I was super strong and able to do the shred and at one point all three levels or the shred than another workout on top. It took me over a year to build up to that though, starting with just walking around the house, then up the road, then round the block, etc ... I managed to get back to walking my dogs 4-5 miles a day in Autumn 2014, but then got back to back viruses and haven't been able to get back there since. I was managing a decent walk in the park by August last year, but again, that's slipped and now they poor things are having to put up with a walk around the block with dh in the evenings.

ladybird I'm clumsy too. Never used to be and find it so frustrating, not least of all because it's always when I really need to get on and do something that I'll drop a full jar of something and have to clean that up, leaving me no energy/strength to get done what I set out to do.

Alice I have multiple unspecified lesions too 'pre-ventricular and sub-cortical white matter' though, none in the grey matter, thankfully.

My private consultant says all my symptoms are explained by Autonomic Dysfunction and that the brain lesions were most likely caused by my severe/complex migraines. Apparently he sees quite a lot of them and there's increasing evidence for migraines causing lesions of the white matter if you Google. I also wonder about hypoperfusion, lack of blood to the brain, with POTs and if that has any potential to cause damage if it's prolonged.

I had all the standard MS tests, which turned up nothing, (LP, Visual, Evoked and Somatatory (sp?) potentals etc) then finally an EEG - at which point my Neuro said there was clearly something going on, but she hadn't a clue what, so would just keep me on 6 month review and to go back if I suddenly lost speech, sight or the use of half of my body!

I then got upset that I still had no answers and was finding it hard to explain to people why I don't work and what illness I have and she told me: 'tell anyone who asks that you have one of those 'trendy' illnesses like ME/Fibro. Neurologists like myself don't believe they exist, but they would be useful for you to explain your symptoms when people ask.' I was so shocked I was speechless.

A month later I collapsed, had two complete blackouts, complete with extensive bruising that occurred while I was out. The were suspected by A&E/Acute Medical Unit to be seizures I was sent for yet more MRIs and another EEG, by which time my Neuro was on Maternity Leave. I saw a Locum who told me my brain scans were normal and there was nothing wrong with me. When I pressed him, he suggested I didn't actually have a blackout, as no-one saw it (I was in the bathroom at a hotel at the time) although dh got to me seconds after I came round the second time and that any other symptoms must be hormonal or anxiety based. My dh then intervened and he agreed to do a 5 day ambulatory EEG, but he messed up that, as I didn't qualify to be funded for it, so it was cancelled. He sent me a letter telling me not to attend, I didn't, then received a week's worth of 'did not attend' letters and was struck off the neurology list. I contacted the EEG department to ask them to amend my notes to show I had been told not to attend, then the Locum's secretary to make sure I would be seen in clinic within 6 weeks as promised, she said I would. When I didn't get an appointment through I left her another message - aaaaand I've never heard from them since. That was Feb 2013. Actually I haven't bothered with the NHS at all since, until I went to get my private referral in December. When I went to see my GP for my recent referral I was given a copy of the Locum's letter to the GP Surgery. It was absolutely full of inconsistencies and downright lies and clearly implied that he thought I was either depressed, hormonal, anxious or all three.

Looking back, the difference between my usual Neuro and the Locum was that she had seen videos of my episodes and he hadn't, plus she'd been seeing me since 2006, when I first saw her about my migraines and had seen a progression of symptoms.

Also I screwed up and had my last MRI done in the open scanner, as I had vowed to never have another MRI, but was pressed to have it done after the big blackouts. Apparently the strength/quality of that scanner is a lot lower than the other ones I'd had MRIs on, so wouldn't have shown up as much - which might explain him saying my scan was normal, otherwise it's a bit odd that all my previous lesions, that my usual neuro was concerned about, had suddenly disappeared. I've since found out that all my referrals are flagged at the top with reference to historical depression (PND almost 12 years ago and reactive depression 16 ish years ago to nursing my husband through a serious head injury) which predisposes any doctors that are so inclined to dismiss me as a hysterical female.

I am so glad I finally plucked up the courage to go private, even if dh's job didn't have health insurance it would have been the best £250 I've ever spent.