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)

I just tried to read it from Woodland's link fusspot. Sounds hopeful, but I think we've still quite a way to go before certain sections of the general public change their prejudiced views.

Some interesting links in the comments as well.

I've saved it all to read again when my brain is actually working.

Hello fellow M.E./etc. people! Just pottering by to offer and and spoons. I managed to 'lose' this thread so it's nice to find it again. Even though I don't post at all much, I really appreciate hanging out in the company of people who understand. The feeling that you have to be always explaining or even justifying the illness is so wearying, isn't it?

I was diagnosed with ME 2 years ago. Also have symptoms of fibromyalgia and POTS. All fun and games. Doing better than I was a year ago though so counting my blessings, la la la...

Re. meds, I'm on Gabapentin for neuropathic pain. kinkydorito you were asking about it a while back I think. It made me dizzy and nauseous for about a week when I started but has bn fine since then and definitely helps. You do have to be careful about sticking to dose though as any adjustment to it provokes same side effects. Tried amytryptiline (sp.?) once, awful, made me feel like a zombie!

Hello

Hope you don't mind me joining in - I was finally diagnosed with fibromyalgia last week, although the rheumatologist is doing an MRI to rule out psoriatic arthritis as my bloods showed a slightly elevated CRP and I have a history of psoriasis. My gran also had terrible psoriasis all over for most of her life.

I've been started on Amitryptyline which has helped me sleep but not touched the pain yet.

Will read the full thread - I think it will be helpful to see how others cope - but wanted to introduce myself first!

Hi oh . Amitriptyline takes a few weeks to help with the pain normally.

I'm struggling a bit with cubital tunnel syndrome at the moment. My own fault I think because I basically sleep in a ball. Anyone else had this? It happens every year around this time .

Moosemama - that sounds terrible poor you
Badders - I'm scared of the dentist too after a bad experience where I could feel pain even after several injections. Again I thought it was just me but now know it's a sign of fibro. Always ask for a tonne of anaesthetic.

Tough day today with the 4DC at home, they wanted to go swimming I detest swimming I detest the cold water. Usually I languish in the baby pool as its warmer. Well they closed it so I'm in the main pool goose pimples and so cold. Paying for it now despite two cocodamol, back, knees, even typing this is painful.

Oh well tomorrow is another day, cinema day at least I can sit for an hour or so.

Sweet kitty...I hate swimming too! Anything that makes me cold is BAD
Dc are off to pils today for a bit and dh is off to Spain with work
Ds2 still gets very upset when he goes....sigh
I promised to take mum out today and now of course I really don't feel like it.
LOADS of ironing to do but it will have to wait for tomorrow
Taking dc to cinema tomorrow and then Thursday will be a pj day I think!
The abx are making me feel quite sick so didn't have a good night.
Hope everyone has a good day

sweetkitty you are such a lovely mum, I would have said no. There is nothing on this earth that would get me into a swimming pool. I have only done it once, when the dcs were desperate to go in the, then, new Legoland Hotel pool and we needed two adults, but I was four and a half stone lighter and all muscle back then. Prior to that I hadn't been in a swimsuit since I was 17 and I haven't done it since either.

I am having hell with stomach acid this week. It kicked off on Sunday in the middle of the night, for no apparent reason and despite 40 mg of Omeprazole, plus mega-strength Gaviscon after every meal it's not getting any better. I'm literally doubled up with the pain for most of the day and being kept awake at night by it as well. I've only been able to eat plain porridge since Sunday.

I've had reflux problems for decades, but haven't had prescription drugs for it for years, after being on 40mg gave be horrible nightmares and insomnia. I have done my best to manage it with a combination of otc omeprazole, zantac and gaviscon, plus being careful with my diet when it flared up, but this is something else. I think I am going to end up having to go back on a prescription for 40 mg omeprazole, as I can't afford to keep buying boxes of the 10mg at £10.00 a pop and taking 4 a day.

My digestive system has been out of whack for a while now though, getting an intermittent mix of sudden dumping that (apologies for tmi) was like passing pure acid and constipation, that turned out to be just thick sludge, rather than proper constipation when I did manage go. Then those stupid bbs, gave me awful daily diarrhoea, which stopped as soon as I stopped the pills, only for the acid problems to kick off big style a couple of days later.

Just to add to my fun, my CRPS has also decided to flare and my foot feels like it's on fire.

Thinking about it, that all sounds like a more systemic autonomic/cns issue doesn't it?

Hi everyone, not really checked in on this thread for ages.

Had a busy day and not feeling too brilliant. I made the stupid mistake yesterday of dyeing my hair, it was a horrid salt and pepper grey so I dyed it dark blonde, and whilst it looks a hell of a lot better, I am in agony in my neck, arm, shoulders, back and legs from bending over the bath for ages trying to rinse it off! and I feel dizzy, I don't tolerate bending over. I won't be able to do it again, I will have to get hairdresser to do it, I can tolerate a backwash.

I had to go out this morning in the cold windy rain and now am freezing and cannot get warm, which is making my aching worse!

I have arranged to start some volunteer work in a charity shop(eeek) It is just one morning a week sorting stock and I can sit down to do it if necessary so it won't be all standing, so I should be able to manage. at least I can get out and about and feel like part of the human race again! Trying to stay positive, I hate not being able to work , I have felt so useless. I only mid-40s, I should have decades of working life left in me, instead I am on the scapheap. so I am feeling quite good about this and will see how I get on

hope everyone is managing ok. I am having a rest day tomorrow, I find I need it after I have been active.

Hello Hyacinth

I am the opposite to you. I can't cope with having my hair washed or dyed whilst leaning back at the hairdressers, it makes me black out and then I have a humdinging migraine afterwards. I'm not good with bending over either, but find it easier to kneel on a low step over the bath, rather than bending from the waist.

Is there any chance you could have a warm bath? I tend to find nothing else warms me up when I'm that chilled.

I am so with you on the feeling like I'm on the scrapheap, despite being mid 40s. Well done for getting out there and volunteering. I hope it goes really well for you.

Thank you Moosemama, i am looking forward to starting "work"!

Yes i think i will have a hot shower its the only way i can warmed up when i have been out!

Agree with the hot shower thing always warms me up and makes me feel better.

Have been in a lot of pain today headache, neck, shoulders, upper back and in my breastbone I thought last week it was heartburn from the naproxen but it's moved across a bit to the right does anyone else have stabbing pain in their breastbone?

Sorry am all new to this although in hindsight been suffering years.

sweetkitty in my experience you can get random pains anywhere. I do get breastbone pain, but I have no idea why. It gets better if I push on it though if I remember correctly. Not had it too recently. I only tend to worry if something doesn't go away within 6 weeks, but that's only based on being stubborn and hating Drs appointments.

Yes I get breastbone pain, and rib pain, shoulder pain....

And mostly all seemingly at random!

Wait... I already said that. At length. I should go to bed...

Pain is right between my boobs almost constant for about 2 weeks

Also have inside of knee pain, pelvic pain, hip pain, back pain, shoulders and neck. DD1 gave me avoid massage tonight cost me a lipstick lol

Am now I bed have had to take a rizatriptan as headache wouldn't go away and was starting to feel sick with it, should really sleep now

Good luck with the voluntary job, Hyacinth. I'm mid-40s too and also fed up with feeling on the scrap heap. I did a one-morning a week voluntary job for a year but had to give up, as it left me wiped out for next 2 days every week. Also it was FREEZING, it was a shop and they always wanted the door left open! I was sorry to drop it though as it was very sociable.

Interested you have problems with the cold. Does anyone else? I've found I've got really sensitive to the cold since developing ME. My dh doesn't really get it. I always seem to have 2 or 3 more layers on than everyone else and still feel frozen.

I'm always cold, even in summer. I have raynaud's though so maybe that plays a part.

I've always been really cold sensitive to the point that when I get so cold my muscles tense so much it hurts. I suspect I may have Raynauds too as the tips of my fingers sometimes go white and numb and it hurts when they are warming back up. Right now I am in bed with a 15 tog duvet another single duvet on top, fleecy jammies, a tshirt under the jammie top and fleecy socks. Also have things about loud noise and strip lightening in particular.

Very achy day today. I filled out my tuition fee/student loan form today, I have a place on a teacher training course starting in Aug but the way I'm feeling just now I think I'm kidding myself it's such a demanding course, im upset as I've wanted to be a teacher for so long.

Hi all, it's been ages since I've been here. There's some ten pages of posts to catch up on since I last read, which I suspect I may not accomplish, so apologies for missing things.

I don't even remember where I was when I last posted. But the GP is gong to now refer me back to the same people who discharged me two years ago saying there was "nothing physically wrong" with me(despite the fact that I am on a medication to control problems with my autonomic nervous system) and that I was depressed. As I had suspected, these are the people who would diagnose POTS if I have it (although I obviously have some dysautonomia, but it would be nice if it was defined enough to make some guesses as to what the effects are/what could help). I don't know how I feel about this. I don't want to go be dismissed again, but at least this time GP is sending along letter from my old Dr that says basically what I said and they obviously hadn't believed me. So maybe that will help.

I'm starting to question things - am I ill? Is this what life is like for everybody? If I am ill, why do all the health professionals keep saying I'm fine? If I'm not ill, why am I so incredibly incompetent and unable compared to other people? Whatever it is, it's not a lack of motivation. I am so incredibly motivated to do things, and the main source of unhappiness, frustration, and anger in my life is being unable to do them. Surely if I wasn't ill, I could just do stuff, right?And how can I not be ill if I need to take a medication every day in order to keep my heart rate within physiologically normal limits? How can that possibly coexist with there being "nothing physically wrong" with me? I am so confused.

Murmaration I have been through your last paragraph so many times. I've lost count of the number of times I've questioned if everyone else actually feels like this but I am just a wimp.

I have had health professionals tell me there was nothing wrong, it was all in my head, it was anxiety, hormonal - you name it, I've had it thrown at me. Finally being diagnosed with POTs via a positive tilt table test and full medical history, plus active stand test, while not actually fixing anything, yet, has at least stopped me constantly questioning myself and finally meant that my GP is taking it seriously and my family don't have any doubts anymore either.

I'm currently off medication, as the first bb they tried me on was dire in terms of side-effects and I waiting to start ivabradine, once my GP has received the letter from my cardiologist. I am off for an echo at the end of the month, as my mum has dilated aorta and I have had a couple of funny ecgs and some arrhythmia.

My mum is going through something very similar. She was referred to cardiology 18 months ago for breathing issues and chest pain. They did an angio, said no issues, but triggered two tia's. She was then sent to General Medicine as a follow up to her tia's and the GM consultant went ballistic that no-one had done and echo. Echo was done and she was found to have severely enlarged left atria and dilated aorta.

That was almost two months ago, the letter never arrived at her GPs, so GP was unable to discuss the results when Mum when to see them and no-one has followed up on those results. In addition, she is currently going through a really bad rheumatoid arthritis flare - I have never seen her in so much pain, despite being turned away from Rheumatology who told her she doesn't have RA. She absolutely does and this flare has her hands crippled with massive nodules. She's now going back to Rheums to be referred on for an EDS diagnosis (little doubt she has it, she's text book and the echo report suggested it as the probably cause of her aortic dilation) and we're hoping they finally dx the RA as well.

The arrogance of some medical professionals, that causes them to just dismiss people who are clearly ill, without proper investigation, is astounding and frankly beyond unethical.

sweets I started a PGCE about 10 years ago and had to leave the course. I really regret it now! It will be tough but they should do adjustments for you. Also make sure you sort stuff like that out early so you get placements as locally as possible. What age do you want to teach?

murmur you just need to find the right dr. I still have days where I question it! You just have to keep going a bit longer.

moose for years my GP never got the letters the hospital sent! No one ever seems to know what anyone else is doing in different departments. There are quite a few criteria for RA diagnosis, and quite often in you're seronegative that's the end of it. I'm not sure if it's because of my family history or if it's standard practice, but I was tested repeatedly for a couple of years in the hopes that something would eventually show up. My GP keeps checking now too.

I don't know very much about RA Living. Have just started reading up. Mum says she had been in remission for a while before she finally got an appointment and was seronegative. She came round yesterday and her hands are seized with massive nodules across all the joints. She's in so much pain, I have honestly never seen her like this before and nothing is touching it. She's no wimp either, she also has osteo arthritis and has had two knees and one hip replaced as a result - her osteo surgeon told her he suspects fibro and he was the one that first suggested EDS, as apparently her tissues during the ops and post-operatively responded atypically. Of course when this was suggested to her GP for further investigation they instantly dismissed it.

She had a fall a couple of months back, fractured just above her hip replacement and had suspected rib and pelvic fractures (but didn't go to the hospital for an xray in time). When she finally went for an xray they found the hip fracture, but didn't bother taking film ribs or different angles of her pelvis, as there was nothing they could do by them yesterday. They confirmed the hip fracture and then told her she desperately needs her other hip replaced. She was told years ago she needed it done, but has been putting it off, as the recovery is so hard when pain relief doesn't seem to work for her.

She's only had co-codamol to cope with all the pain, but finally started tramadol this week. Unfortunately it's not touching the pain at all and she won't take anti-inflammatories, because her stomach can't cope with them.

She's got a Rheumy appointment at the end of the month and a GP appointment for next week (earliest she could get in) but is worried that things will have settled down again by then and she'll test negative.

Between the heart issues, fibro pain, ra pain, oa pain and the fractures, plus really bad digestive issues that keep getting put down as ibs, when it's clearly more like gastroparesis, she is in a real state and desperately needs someone to listen and take swift action. Instead they just keep stringing her along and treating her like she is ancient and just needs to plod along with it all, she's only 66 fgs.

Sorry for the rant, I am just so worried about her - she's always been so strong, independent and determined and she's reached the point of just giving up.

Oh god that sounds awful! It's one thing to go through all the diagnosis stuff yourself but then having to watch your mum go through it, and for it to go so badly!

It's ridiculous that a lot of the time it's just down to luck if you get anywhere!

Could she use a patch? They've given her high strength cocodamol haven't they?

She's only on 30/500 and has now stopped the tramadol, because it made her spaced out, but didn't stop the pain. The problem is she has severely slow motility at best and the side effects of the co-codamol on her bowel are awful. My younger sister has better pain relief for less pain, she's on a patch.

She and my stepdad won't let either myself or my sisters attend appointments with her. I just feel so helpless.

I have begged them to go private, they can afford it, but sd is very careful with his money and Mum won't stick up for herself.