Fibromyalgia & Hyper mobility.......talk to me about my diagnosis

[KatyMac]

Went to hospital today expecting an arthritis diagnosis, came home with these

So, where do I go from here?

I'm very confused/at a loss

My sister has fibro and HMS, I think there are plenty on here who have it and are probably much better qualified to talk to you about it. A diagnosis is always a good thing though, now you can begin to access the support you need to manage it properly. Yes you get flare ups but it can be managed once you get your pain medication sorted (generally involves lots of fiddling around until you find what works for you) and once you have become familiar with your limits and triggars for flare ups. Good luck :)

look at this website it has useful information.

If you are anywhere near London I recommend going to see Rosemary Keer in Harley Street. She's fab.

Thanks for this info

Some of the of the consultant recommends is quite easy - baths morning & night, start Pilates; I can do these (but I'll have to find some extra money, we are on a water meter)

I have hypermobility too and it's a total pain (if you'll excuse the terrible pun). As for the baths morning/night, I do that and last year I discovered my water company actually have a scheme for people who are using extra water for medical reasons and are on low incomes. Maybe yours does too? Can't hurt to ask, they've cut my bill by about a third and it all helps!

Still a bit about it all

Thanks for the info about the water company

Slowly starting to come to terms with this

No, I'm not; I'm pissed off

Big time

Well I've already worked out baths in the morning help; but the one in the evening is not great - I need help to get out

Coming down to earth again

It's been a bit of a weekend

Here's a PDF about fibromyalgia.

www.mefmaction.com/images/stories/Overviews/FMSOverview08.pdf

Thanks I'll have a read

The main UK site for FMS is www.fmauk.org/phpBB3/index.php

you'll find all the info & support you need & more on there, including that HMS is very common amongst us FMers

glad you have some answers, might feel a bit odd right now, but it does help to know what you are dealing with :)

is the hypermobility site

i have both too and facet joint arthrosis, so need any info give me a shout.

Oh there is nothing really (in real terms) to get used to other than get yourself into a very good routine of early nights and be prepared to feel like you've run the occasional marathon (usually pre-menstrual for me) and colds will knock you totally for 6.

Otherwise it's easy. You'll probably be put on something like Lyrica or Cymbalta for the fibro but they do make you gain weight extremely easily so think carefully about those, although Lyrica is my little life saver :)

HMS is a bugger more when you injure yourself as it takes longer to heal but you're less likely to break bones as a result.

You're also at greater risk of early rupture of membranes in pregnancy as a result of the HMS and your pelvis and sacro illiac joints will end up FUBAR and to get your pelvic floor back will take a LOT of work.

Pilates, Yoga, walking, swimming, cycling. Just keep active. The more aerobic style exercise you do the better your sleep cycle the easier your Fibro will be to manage. Sounds odd doesnt it, when the last thing you want to do is exercise, but do enough to wear you out but don't go to the point of hurting.

Stay fit and healthy is the best thing to do.

Seriously. It's a shitty diagnosis but i've had this for nearly 20 years now and i cope, i work full time, i have been a long term lone parent, you just have to fit it into your life. Don't let either condition run yours.

Oh there is nothing really (in real terms) to get used to other than get yourself into a very good routine of early nights and be prepared to feel like you've run the occasional marathon (usually pre-menstrual for me) and colds will knock you totally for 6.
I have had CFS/ME for 16 yrs, so I am used to that I wonder if my CFS ever was or if it were misdiagnosed FM

Otherwise it's easy. You'll probably be put on something like Lyrica or Cymbalta for the fibro but they do make you gain weight extremely easily so think carefully about those, although Lyrica is my little life saver they have suggested Co-codamol & naproxen & no more hospital visits; just get on with it

HMS is a bugger more when you injure yourself as it takes longer to heal but you're less likely to break bones as a result. well at 42 (nearly 43) I'm past the worst breaking bone time but do you think this could have been noticed before??

You're also at greater risk of early rupture of membranes in pregnancy as a result of the HMS so that's why he was interested in my 3 miscarriages
and your pelvis already there
and sacro illiac joints will end up FUBAR my what?

and to get your pelvic floor back will take a LOT of work. had a bladder repair 6 yrs ago

Pilates, Yoga, walking, swimming, cycling. Just keep active. The more aerobic style exercise you do the better your sleep cycle the easier your Fibro will be to manage. Sounds odd doesnt it, when the last thing you want to do is exercise, but do enough to wear you out but don't go to the point of hurting.
Stay fit and healthy is the best thing to do. great

Thank you both for the websites

CFS and Fibro are interchangeable as is HMS (the syndrome part of hypermobility is the fibro style pain and fatigue you're suffering).

If all they've suggested is co-codamol and naproxen request a referal to a pain clinic or simply ask your gp if lyrica would be helpful.

Yes quite possibly why they were interested! Sorry to hear of your losses though. Your sacro illiac is your tail bone or the back of your pelvis.

I know it's hard but you really do have to stay active it hurts to buggery but please believe me on this even if it's a case of you walk round the block once (where before you didn't) then in a month did it twice, then another month do it three times. You MUST wear yourself our and you MUST keep your aerobic exercise levels up as high as you can tolerate without hurting yourself. It is very very hard to crack the back of the cycle but please believe me when I say it does help.

I work 50 hrs plus (I own a small nursery) plus paperwork; I'm doing an OU degree, I have a 13yo and an 80 by 50 ft garden: I'm permanently knackered - I am looking into Pilates tho'

My Pelvic floor has been shot, since DD was born, & fixed (TVT) with plastic & velcro

Would it really have caused early miscarriages? (I suppose I could understand later ones)

My mum is also relieved to know the 'growing pains' I had for years as a child actually did exist

In which case you need to wind some of that in! No wonder you're fatigued!!

I know but I lost my whole life back in 95 with the CFS; I'm not sure I can emotionally lose it again now

It's taken me years to build up, very gradually to where I am now

What do I dump? The garden I guess, but I do love it (doesn't it count as exercise?)

You're not going to lose it just reign it in a bit, get help, prioritise. You don't have to be so all or nothing you can be a bit of everything you know.

OU degree, ring them, ask for support, extensions on deadlines, how far through the actual degree are you? Can you take a sabbattical? Your 13 yo is old enough to help with the garden and round the house perhaps suggest she can have a party at the end of the summer if she keeps it in shape?

How much help do you get with the nursery? Could you delegate some of the work take a bit of a back seat?

You don't have to give anything up just slacken off a bit.

I guess

I'm just scared & panicing

It was horrid last time - I spent 4 months in bed and walked with a stick for over a year; it took years to get back to even vaguely normal and 16 yrs on it starts again

But you can be in control of it. It doesn't have to control you. Take charge. For now if you're in a flare. Rest. Then pick the pace up as you begin to feel better.

KatyMac - some people have both ME/CFS and Fibro, so it's possible you have both.

from www.mefmaction.com/images/stories/Overviews/Canadian_ME_Overview_A4.pdf

"Differences Between ME/CFS and
Fibromyalgia Syndrome (FMS)
ME/CFS is commonly triggered by a viral infection.
There is usually greater fatigue, post-exertional
malaise and fatigue, and cognitive, cardiac and
immune dysfunction than in FMS. Pain is the most
prominent feature in FMS, which is often triggered
by physical trauma. Many ME/CFS patients also
meet the criteria for FMS. The research test for
deregulation of an antiviral defense pathway can
distinguish ME/CFS from FMS. Patients meeting
both criteria test the same as ME/CFS patients."