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)

moose I am in Scotland, and not sure what our PALS-equivalent is, but I've decided if I still need to see a Neurologist after these results I will be switching to someone else. In that case, I will be making a complaint to whoever it would be.

I'm sorry you are still feeling so crappy What will the consultant do once he has the results of your tests? Is it medication-based?

Sorry the 'free precriptions' thread in AIBU got me wondering...

how many of us take regular paracetamol? Do you get them on prescription?

I get cocodamol on prescription but just buy my own paracetamol.

Try some OTC sudafed for fluid behind eardrums. It doesn't work for everyone, but might help. It can have caffeine like effects on you though so don't take it too late in the day.

I take sooo much paracetamol I buy it from Aldi because it's the cheapest I've found. I also use soluble co codamol too quite a bit.
I have a stash of nefapam and tramadol left over from my gallstones Op (I like having them in the cupboard in case!!)
Tried my insoles today and I HATE them :(
Back to physio on Monday
Been told I have passed my trial and am being given a contract after easter. I should be pleased, but I'm just sad that I find it so tiring. It's only 1.5 hours a day in Term time. At least I have 2 weeks holiday coming up...
Ear very crackly today and have felt quite sick but still taking the tablets.
The Dr said it would go on its own but it feels horrid. I actually have some stugeron (no idea why!) So I might try that. Dr gave me a week of stemetil so we shall see....
So sorry to hear you are struggling moose.
Forgot to mention in my long list of illnesses and issues that 3 years ago I had an episode of atrial fibrilation. Have any of you had this?
I was blue lighted to resus - it was terrifying. Spent a night in cardiac care but was sent home and had an echo which was ok.
I have tablets in the cupboard should I need them but never have.
Dr thinks it's hormonal (am peri menopausal and have lots of issues with night sweats, breast pain, weird periods the works) but I'm terrified of it happening again :(
Since I turned 40 it's all gone to shit Tbh

Wrt paracetamol on prescription - my mum does get them but only capsules (which she hates) not tablets. The Dr told her tablets are too expensive.

Sounds like a good plan Alice.

Yes, I've been having to do daily stand tests since starting a beta-blocker for my pots, but I messed up and did random tests for a fortnight before re-reading the letter my consultant sent to my GP, which said to do them 2 hours after taking a pill. So I've had to do them again this week to get the data he wanted. I'm pretty sure he didn't say two hours after the pill at my consultation, but still.

Badders iirc, stemetil didn't work for dh, but the stugeron really helped, so it's definitely worth having some as back-up.

You are bound to have been scared with an afib episode. I haven't had that, but have an unspecified arrhythmia which shows up on my oximiter wave pattern when I'm feeling really rough and dodgy a ECG results with a prolonged QT and weird T-wave, for which I'm seeing a cardiologist at the end of the month. I know how much that's on my mind, despite having had a clear ECG since the shonky one.

From what I've read you can just have an isolated episode of afib triggered by something and never have another, but I think I've read hormones can play a part too. It's good that you have the medication though, as that should stop it in it's tracks.

I don't get any pain relief on prescription at the moment, it's generally cheaper to buy it without the prescription anyway. I take paracetamol regularly, but generally take ibuprofen/lysine more often, as it works much better for me. I have to take codeine on top of lysine to stop my migraines and thankfully still have a few from when I developed CRPS as it doesn't work for that, so have to be strict and only use them when desperate. Unfortunately I am not allowed to take NSAIDs with these beta blockers, so I'm dreading getting a migraine - although interestingly I haven't had one for the whole time I've been on them, three weeks migraine free is unheard of for the last 18 months or so - which would be great if they actually stopped the tachycardia as well. The best combination for my worst migraines is naproxen and 30/500 codeine/paracetamol, but I can't face asking the GP for either of those.

Aren't bb a treatment for migraine or did I imagine that??
I love codeine - works well for me
I will try the stugeron if the stemetil doesn't work
I am desperately trying to stay awake until 10 when my next sale slot opens!!!

Bb's are used for migraine, but have never worked for me before. The odd thing is, the bb's I'm on now are cardioselective/specific, so I don't think they're indicated for migraine.

Trust me. The ones indicated for migraine don't have any effect on my migraines and the ones indicated for tachy, don't have any effect on my tachy, but stop my migraines.

I haven't been sent a Next sale slot this time.

I was given Propranolol - a BB - two weeks ago for migraine (which I stopped taken after a week as I didn't sleep on them).

You aren't missing anything moose
Utter rubbish

Kinky I had propanolol years ago for my migraines, they did nothing for them, but gave me horrible nightmares.

Mind you, very little has worked. Topomax/Topiramate reduced the frequency slightly, but I couldn't cope with the side effects even on a low dose and I developed a different, worse kind of migraine while I was on them (2006) that never went away again. The only positive side effect from Topomax was weightloss!

Badders good to hear I'm not missing any bargains.

I've been bad though and spent £100 on summer stuff for the boys at h and m online instead! Oops!
Ds1 is growing at such a rate he needs 2 new wardrobes a year!
Mind you I got 5 pairs of shorts, 5 tops/polo shirts and 2 pairs of shorty pjs for that. Pretty good I think Dh will not agree :)
Off to work soon.
Still feeling rough.
Oh well.

Moose...meant to mention...ds2 is on pizotifen for his abdominal migraine.
Did you try that one?

Sorry you aren't feeling any better this morning Badders. Hope work isn't too bad and you can catch up on some rest this weekend. Not long now till the holidays.

I put £75 worth of childrens' clothes in a shopping basket on the BHS site this morning, but then decided to save the basket and think about it. Extra 25% off ends at midnight though, so will have to go back and make my mind up this evening. Ds1 and ds2 have both suddenly shot up this year - typical now they both have expensive secondary uniforms to buy. Ds1 has always been tiny - and he still is compared to his mates who are all six footers these days, but he's only a year behind in clothes sizes for the first time ever now. Can't believe he's going to be 14 in a couple of weeks!

I wasn't allowed pizotifen for some reason. Can't remember why though. The neuro considered it when I came off Topomax, but then decided against it. The worst thing I was tried on was Imigran/Sumatriptan. It triggered a really scary heart-related episode and I collapsed in a restaurant. Dh and dsis thought I was dead. Unfortunately that rules out all the other triptans that can be used for migraine as well.

Blimey how scary!
Work was ok. Well sort of. My colleague was off sick so another lady came to help, she is very nice so it could have been worse. Lots of injuries though. I won't be sad to see that back of some of the year 5s this year!!
My ds1 is 13 soon. Where does it go? sings Abbas slipping through my fingers and starts weeping
:)

Children growing up are scary.... mine are 11.5 and 14 Must admit I'll be glad when the 14yr old outgrows his teenage tantrums(!)

I saw a chiropractor yesterday. I've not felt convinced that my lower back/pelvis pain and my upper shoulder pain was 'just' fibro related. Over the years I've seen physio's and GP's and it's always been dismissed as 'it's just fibromyalgia'. A local chiropracter has set up a new clinic in my town with an offer for reduced price consultation, dh and I figured it was worth a consultation to see what they thought and hence had the first part of the consultation yesterday (it's split into a medical history/examination and a result/plan so 2 1/2hr appts). I go back next week but a basic overview is my pelvis is twisted - probably due to the severe SPD I had in my pregnancies and as a result I have one leg shorter than the other plus my spine is twisted, all of which could be causing or exacerbating the back and shoulder pain. I shall see what they say next week about treatment plans etc but I came away feeling positive (despite the pain!) and feeling she did know what she was talking about (based on my own knowledge). Fingers crossed that i may have at least some pain reduction to come.

I was asked on the forms I filled out as I entered the building "what do you hope to achieve?" all I could think was 'anything, any reduction in my pain would be amazing' I honestly couldn't think further ahead. I'm not going to get my hopes up, I've been there before but I felt that for me, it's worth a try. I'll let you know how I get on.

Change of subject - I've just watched Monty Don's garden show where he helps people sort their garden whatever the size. One family this week were changing part of their garden to make a relaxing space for their daughter who has CFS. She was about 11 years old I think. I really think they missed a trick as very little was said as to what CFS is and how it affects her/people (more was said about someone in a previous show who had suffered a period of grief following a family members death) but it did really highlight to me (someone in the "know" !) how invisible CFS is.... WHY wasn't more said to educate viewers???

daisy my ds1 hasn't been tooo bad with teenage tantrums (although we could have it to come as he has ASD, so is developmentally delayed). Ds2 (12 mid April) is definitely starting to get really moody and very snappy with his little sister, which is really unlike him. Think we're going to have a bumpy ride with him.

Chiro appointment sounds positive, in as much as now you know you were right and what you're dealing with. Dmum has a twisted pelvis and used to have one leg shorter than the other before her joint replacements. She found private pilates lessons, particularly using a reformer (pilates machine) really helped straighten her out.

I had severe SPD with ds1, but not as bad with the other two, after a course of osteopathy. I was amazed how well it worked, especially since I rotated hips and twisted femurs from birth. Fingers crossed the Chiro can help reduce your pain.

I find CFS/ME, PoTS, Autonomic Dysfunction etc are either glossed over or misinformation is given out in the name whenever they show up in the press/media. I think it's easier to either sensationalise or minimise than to educate. Basically they're not in it to educate really, it's all about entertainment. Then you have celebs that claim they've suddenly been diagnosed with one of these illnesses/disorder whilst still apparently going about their celebrity hi-life lifestyles and acting/singing etc. They drive me batty.

badders you might need to phase the insoles in. I got some last year and they took ages to get used to. Although mine were for a different reason.

Also, when you say you tested positive for lupus do you mean your ANA was positive? The diagnostic criteria is a bit more complicated than that as the ANA could mean any number of things.

alice probably should have mentioned that I can't buy 30/500 cocodamol OTC. I do get prescription pseudoephedrine that I could buy OTC but it costs me a fortune if I do.

Moose I had terrible trouble getting support and help in my pregnancies, I saw several nhs physio's during both pregnancies and they all said there was nothing they could do barr give me crutches and a "support belt". I saw a private consultant (can't remember his speciality) after ds2's birth and was told 'you need to loose weight and tighten up the tummy muscles' ds2 was 10 days old and I'd had a caesarean.. And I also saw a private physio who apparently specialised in SPD and related issues who gave me exercises to do and that was it. I felt very unsupported and although both pregnancies were very difficult and painful, I found my second pregnancy horrendous with trying to look after ds1 etc while DH was at work. It will be interesting to see what changes following the chiropractic sessions.
I tried Yoga rather than Pilates - as recommended by my GP as good exercise for people with fibromyalgia/CFS (I went as I wanted to show willing to try) - last year. I'd spoke to the teacher, explained the problems etc and she felt that the gentle class (for back pain/over 60's) would be suitable... I'm still suffering with the exacerbated pain now especially in my ribs (costochondrotis) but my lower back as well.

Yes it is all glossed over in the media and yes, I struggle with 'celebrities' saying they have 'whatever' yet showing no signs of changing lifestyles/what work they do. I got really annoyed last month when all over FB were posts saying conditions such as Fibromyalgia were only causes due to lack of inactivity ?? What?! I, like many people I know, was always doing something, was fit and seemingly healthy. I certainly wasn't inactive and sat watching tv all day.... grr that did p me off!!!!!

Yes it was ANA
I had repeated nephritis last year which is a major symptom of lupus.
Dunno.
I haven't worn them today as I forgot. Also keep forgetting to do my best exercises...mixture do better!!!!

daisy I had the same, rubbish, response from the NHS with my SPD. Ended up just signed off work and advised to 'rest' for most of ds1's pregnancy. I didn't get any physio at all, it wasn't considered during labour and wasn't mentioned postnatally, even though it was still a massive problem.

As well as the osteopathy, I found MBT trainers really helped me to realign and strengthen my pelvis, abdomen and lower back. They're pricey but have been worth every penny for me. I haven't had any for a while, as I wore the last pair out, but am just about to buy some more, as they activate the leg muscles really well and I'm hoping that might help my PoTs.

Mum's pilates teacher says she thinks pilates is better than yoga, as there's less risk of over-extending, but I guess she would say that really. We're all hypermobile though, so that could be another reason why she told us that.

I also get really cross with the 'it's lack of activity/deconditioning' line. Most of us were super active and fit before this happened to us, often overnight. No-one ever seems to notice that though. I have twice been able to regain fitness to a quite a high level over the past 40 odd years, but always get knocked back down again. I'm hoping to try again if this consultant can help with the worst symptoms so I can get back to it.

I played rugby, swam, went to the gym, aerobics...the works.
HArd to imagine now

Yup.... long distance horse-rider and cross-country rider, long distance walks and allotmenter/gardener. I was fit pre kids and regained that fitness post kids. I so want to be fit again...

I have hypermobile joints too. I did mention that to the yoga teacher and she said she also had hypermobile joints (I was impressed I have to say with the moves she could do!). I guess they would say what they do is best though!

Same here Badders horse riding, worked at a stables, aerobics, speed skating 2-3 times a week and more.

I actually had an obsession with exercise/fitness and spent most of my time exercising in one way or another. All that stopped when I was 19/20 and almost overnight I found I couldn't even get out of bed, let alone walk. Dh was at uni and I was the sole breadwinner. I almost lost my job, until my boss insisted I go in to discuss the issue with him. He came down the stairs just as I dragged myself to the bottom of the stairs (about 15 steps from the carpark) and was trying desperately to get up the first step . Took one look at me, panicked and told me to go home and stay there until I was properly better.

Going back through my history with my consultant was eye opening, as it threw up so many things right through my childhood and teen years that were so obviously related, but I'd never made the connections. I suspect being so fit actually masked the signs of something not being right, right from when I was very young.

Did you have Glandular Fever? My first bout of Fibromyalgia started after having severe GF and it took five or six years to go, though at the time we didn't know it was Fibro and any doctors I saw dismissed me as faking. I finally found one doctor who, besides my parents, believed me but he thought I had some sort of viral arthritis. It was only when it came back and I was diagnosed with Fibro and Chronic Fatigue that the connection was made. I haven't been dismissed as faking this time round but the lack of support is no better.

That said, I have heard I have finally got a place on a self management pain management course so maybe some support is coming? Only seven years after this bout started mind......! Can't believe it's been seven years.... 2009.....