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)

Yep

Not had GF myself. I did have a virus just before I became bedridden, but it wasn't a really, really bad one. Doubt that was my trigger really, as tracing it back I'd started getting autonomic type wonkiness years before and it had been getting worse. I was just too busy to pay attention at the time.

Got glandular fever aged 17 and it's been downhill since. Every time I get sick, my neck swells up. I absolutely think that has trigged genetic Fibro. ME/Fibro is in my family and I think I have both. Only formally DX with Fibro.

Pretty much the same for me kinky except I was 18

We have lots of autoimmune conditions in DMs side of the family but I was the first with Fibro/ME. A cousin on the same side was diagnosed a few years later.

GF was at 17 and between then and now I've had 2 periods of good health before lapsing into periods of not good health. Each bout of ill health has got longer.

I really hope research pinpoints something to allow us to at least say 'that's what it was' as to what set it off and if it is genetic (I strongly think there is a genetic link for at least some people) plus also research to find ways go treat and hopefully cure...

I heard back from my consultant last night.

He wants me to stay on the same dose, but take it in the morning, instead of the evening and then take 2 hourly bp and hr readings.

Relieved he doesn't want to up the dose, but still not best pleased. The morning dashes to the toilet with an upset stomach while I've got low bp are not fun at all and although the breathlessness has improved quite a bit from the first week, I still feel like a granny on the school run. I also get such horrible chills and tiredness after I've taken the pill at night, that I don't know how I'll manage with that during the day.

He told me not to even try to stand for longer than 2 minutes at them moment, but then if I hadn't done a few 5 minute stands we wouldn't have known that my hr still goes up by around 3 and a half.

Speaking to GP about repeat prescription tomorrow and will give it a go, but am not looking forward to it.

It's so frustrating isn't it, when they get no closer to actually fixing the problem.

Two days until I see the neurologist, and I'm still so, so angry with her. My friend is coming with me.

Thinking of you both X
I picked up my new varifocals today so I feel weird
Also just had physio so will be in agony later

Thanks Alice I really feel like I could do with a hug this morning. Raging pmt isn't exactly helping either.

The only good thing is that the dcs break up on Wednesday, so at least I won't be having to do the morning school run after a morning dose for long.

Not sure if I will be fit for my 9.00 am driving lesson this week though, which is a problem, because my instructor is going in for an op, which means, although my test isn't until mid/late May, I only have four lessons left and can't afford to miss this week's as well.

So glad you have a friend going with you to your appointment, it really helps when you don't have to face things on your own. Dh is about as much use as a chocolate teapot at appointments, but it still helps to have him there.

Morning Badders my bil was telling me the other day how strange he found his varifocals at first, but once you get used to them they're great.

Can you take anything to lesson the impact of the physio?

He said to ice it.
Ice!
I shudder at the thought!
My insoles are hurting too.
Had a horrid day at school today...had to restrain a child :(
Only 3 days to go.....!

I was told icing my bad foot/ankle was the worst possible thing to do. Something to do with the nerve responses in CRPS. I think the more recent advice mum had was to alternate heat and ice, but don't quote me on that.

Sorry you had such a horrible day. Must have been very upsetting, not to mention painful and exhausting.

I have decided not to switch my pill to the morning until dd breaks up and I don't have to do the morning school run. Actually, I think I'll wait until Friday so I can get my driving lesson on Thursday in first as well.

Im 23 with a 8 year old n nearly 4 year old i got diagnosed with ME about 3 years ago but they said it could have dated back to when i was about 10 over the last 3 years its just been a downhill slide i litrally dont have good days im in constant agony the meds dont work im always extreamly fatigued and always hit a point through the day were im to tired to even speak i feel so low and cant see a way out its made my mental health alot worse but im always to poorly to go to therapy and most other appointments so they strike me off n tell me to come back when im better but i honestly dont know if things will get better ive been referred to the paon clinic but a month later and still nothing and on top of that ive also been getting signs of sleep apnea (sorry about the rubbish spelling lol) but they have just brushed it under the carpet, i also seem to get every bug thats going but it lasts alot longer like a 24hr bug can last me over a week but i catch something at least once a month ive lost 99% of my friends and only my close family and odd old friend that know i have this condition because i find it 2 nackering to try explain it and i dont feel i know enough about it myself ive looked up.treatments and everything i can think of tbh but the doctors have no idea how to help me and one doctor even looked at me and said, well if you know its your condition thats causing the problems what do you want me to do about it!

Moose...that sounds sensible re tablet. I am not Icing my back. I would never get warm again!
Minions...I don't know what to say other than as you have gathered from this thread you are not alone!!!
Ime Drs know so little about ME that they seem to just flounder and make inappropriate comments - one dr told me as far as he was concerned ME didn't exist. I moved practises!
I am looking forward to the break at Easter...I have a difficult month coming up with dh away a lot

Alice...how did you get on?

Minions welcome to the club no-one wants to be a member of. My neuro told me to tell people I had ME/CFS or Fibro, to explain my symptoms, but that she didn't actually believe any of those conditions exist and neither did any other neuro.

Badders I think Alice's neuro appointment is tomorrow.

Hope you can get some downtime over Easter, although I know how hard that can be with the kids at home.

Woke with bp low 80s over low 40s this morning. Felt like I needed to be scraped up, rather than get out of bed. Two of my dcs (more specifically the teen and pre-teen) actually did me a favour by getting me cross though, so between that and drinking a daft amount of water, I was functional enough by school run time. Think I must have looked rough, because another mum asked if I was feeling ok this morning.

Had to walk into the village to buy a couple of bits of food on the way home. It's normally a 3 minute walk, but took me 10 and I was on my knees by the time I got back. Sometimes it's hard to believe that I used to walk my dogs 4-5 miles every day.

conference leaflet for doctors 2nd page has some details of who will be speaking

I even tried a powder called ME relief in hoping the pain clinic can help other wise i dont know what i will do i cany even walk to my mums and she lives a streed behind me :( i feel like my kids are suffering because i cant do any of things i used to with them, it sounds awfull but i wish id been diagnosed with something else because at least other conditions are more well known so they have more info on managing and stuff if i ever won the lotto id invest in research because theres an answer our there somewere

MumOf2 what sort of pain do you have. Is it Fibromyalgia? What assessments have you had done - Physio, Occupational Therapy, etc? Just wondering if anyone on here can suggest anything, but they'd probably need a bit more info.

I had physio yesterday
He broke my Arse

I cant explain it to well the doc said he thinks ive got FM aswell but never actually diagnosed it the pain is unreal its in my hips, back, and sholders worse but most days it seems to be every joint the stairs hurt me so much i try to put off going to the toilet ect. Luckily i have a downstairs toilet lol im on pain blockers, amitryliptalne beta blockers i was on oramorph but came off it as i dont think thats a good option ive had physio but that just made it worse i hurt for weeks after im just struggling to cope

Badders, i hope the pain goes away soon nothing worse than extra pain x

Minions...I have had hip.pain atm and its quite debilitating.
I'm on my feet for 1.5 hours at work each day abd I'm struggling this week. I think the physio has made it worse really

Badders is the physio actually helping at all?

Mum it does sound like the next logical step is the pain clinic then. The physio that helped me sort my Complex Regional Pain Syndrome is a pain-clinic physio for the NHS and she was great, really knew her stuff and knew what was wrong and how to treat it straight away, after multiple doctors and another physio hadn't a clue.

Your GP should have referred you for a Fibro dx, if he thinks you have it. GP's often aren't best placed to keep up with the most recent treatments, you should be getting specialist support.

Spoke to my GP today. She's prescribed another month of the beta blockers and agreed with my consultant that I need to start taking them in the morning because they're dropping my heart rate too low at night. She thinks it might help avoid the low blood pressure issue when I wake up every morning as well.

I'm still not going to start taking it in the mornings till dh is home on Friday though.

Badders sorry, meant to say, the NHS physio I saw for my CRPS was hopeless. The basically stood there and looked at my foot/leg once every couple of weeks and told me to keep doing what I was doing (which was the exercises from the private physio that dxd me). They actually had to go and look up CRPS and then on the second week turned up with a leaflet about it.

Speaking of which. My CRPS has been attempting to flare up again over the past couple of weeks, possibly triggered by my drop in activity due to med side effects and the virus I had. I've restarted my exercises and massage etc, but it only occurred to me last night that it's my clutch foot. I've been moaning at my driving instructor that I've been struggling with the clutch for a couple of weeks now, keep moving my seat around, still doesn't feel right and seems jerky. A sudden light-bulb moment when doing my exercises last night made me realise it's the same foot and I actually can't raise and lower it in a smooth motion at the moment, so it's no wonder it's affecting my driving. It's not dangerous in any way, but makes me look like I am not as experienced as I am with my clutch control and I don't want it to affect my test. I only have five more lessons before my test, as my lovely instructor is going in for surgery. Think I'd better be a bit more disciplined about my ankle strengthening exercises!