Hi I have just been diagnosed with fibromyalgia and hypermobility after 20 years of being treated for the wrong illness

Hi Sue.

How are you today? I read your story I can say that I can sympathize with you.I was diagnosed with having Fibromyalgia 18 years ago they put me on ampertripcian which I take 50 mg at night before a go to bed,I have good and bad days flue symptoms it makes me very miserable and I'm sure that it does to you.Are you on any medication ? Karen

Hi Karen thank you for replying, I'm already on morphine , paracetamol for pain and muscle relaxant med etc and doctor gave me amitriptiline yesterday to try and help me settle enough to sleep just a low dose because of my other meds I am so badly affected by cold my face freezes and my whole body seems to lock up it's never been as bad as it is now and when I read the symptoms checker it was like they'd written it for me . I'm not a dramatic person I try not to mention that it's so bad but it's become so obvious now I can't hide it from my daughters I wish I could . In summer I can at least have quality of life thanks again , Sue

Hi Sue sorry to read you're suffering so badly. Amitriptyline I is often the first drug that is tried. I took it for a long time but found myself too dopey in the morning which was hard particularly on the days I was going to work. I'm now on pregabilin which was fairly new to the uk when I started it in 2008, it was prescribed by the rheumatology dept I was under at Guys. I've just upped the dose because I've stopped taking ibuprofen which was the main painkiller I took for ages but I think it was inflaming my colon and causing a lot of pain. It's tough because it helped keep the arthritis damped down a bit.

I hated it when my children were at home because tho I tried to hide it they used to say you're always ill mum which isn't good to hear!

I agree the summer is easier, physically and emotionally. Spring is around the corner. I find it helps to buy spring bulbs like daffs and hyacinths to keep round the house where I see them they really lift my spirits.

Depending on where you live you may be able to get a referral for some cbt or ideally a mindfulness group which can really help you manage things. Have you seen a rheumatologist for your fibro?

Good luck keep us posted. V x

Ps sorry to hear you were wrongly diagnosed for so long. Can you say a bit more about the hypermobility? I have it I. My feet which has caused problems all my life. I. Having surgery next week to correct some of this which will be wonderful. I often wonder if it's also in my back/ribs which often hurt if I stand too long, almost like they can't keep me upright too long!

Hi thank you so much for all this info I slept a bit better last nite , I had an accident 6 years ago and snapped all 4 ligaments in my leg I had to have a full total knee reconstruction , people confuse it with a kneecap reconstruction . I don't get any support to do with that really as it's so rare no one knows about it other than the surgeon who repaired my knee .so I now have artificial ligaments it left me very disabled and I used crutches when I got out of using the wheelchair. Cut a long story short I had suffered with odd bits n bobs since a child but coped and after my accident they said both my legs had been very hyper mobile . I realised that my funny shoulders arms and ankles that I'd had as a child were due to the same thing.

Ps forget to say the most positive thing I adore plants and flowers my husband helps me do my little planters and seeds and it keeps me positive watching them grow. A lot don't realise how hard it is having no real social life and friends get fed up they have almost all gone over last 6 years cos I can't be who they want me to be

Yes sue it's a hard thing with friends isn't. But you can only be who you are and if they don't accept this then I'd say they're not true friends. I know this sounds harsh but I have been thru this myself and friendship is about give and take and accepting the other for who they are not who we want them to be for or own needs. I'm glad you have a supportive husband makes a big difference doesn't it!? I'm having surgery (elected) on my feet next week which hopefully will revolutionise my footwear and therefore my life. The hypermobility has caused life long problems. Day at a time and take pleasure in the small things :-) 🌷v

This is of interest to me as my daughter and granddaughter have hypermobility and my daughter may have to have surgery as her toes are very deformed and I wondered if it was connected to her having HM ,is your surgery because of HM ?

Yes it's due to HM. I have had bunions and bent big toes since i was 7/8. I used to regularly turn my ankles over too, but no one ever wondered why! Now there is a knock on to my other toes as it's so hard to get good fitting footwear so other toes suffer and get damage. In addition two toes next to the big toe are beginning to claw. I now wear orthotics which will hopefully prevent further problems. I did this via a podiatrist and would recommend. I just wish my mum had done something about it when I was young could have saved me a lot of pain and frustration.

I've elected to have this surgery and am lucky to get it done on nhs. V

This amazes me I have 3 daughters two have deformed toes all have feet probs all have signs of HM my youngest at 14 her toes are clawed and sideways her feet are so wide and the outer bone is growing out she has pain in all shoes and only just got to see a podiatrist I mentioned HM to them and they weren't sure so she is seeing someone more senior in march and you have just given me the confidence I needed to go back and fight for her thank you so much and very good luck with your surgery take care all of you who are suffering

Glad if it helped. I went to see a podiatrist privately which is an option if you can't wait. Good luck whichever way you go and what a great mum for sorting this for your children. Best of luck :-). V

Thank you x

I've been diagnosed two weeks, after being treated seperately for ; migraines, IBS, cervical spondylosis, osterporosis, depression etc. etc. for years and years...its soo great to find someone in the same boat. My symptoms have been somewhat masked by the fact that I've had a renal transplant 23 years ago and am in remission from breast cancer (and also stage 1 malignant melanoma and cervical cancer) but when the Rheumatology consultant finally saw me and thoroughly went through everything, he diagnosed Fibromyalgia with Joint Hypermobility (I score 9 points on the Beighton Scale). I'm struggling to come to terms with it a little although its great that I have a name for how I feel and that I'm not just faking it/ imagining it/ exaggerating my symptoms. Im already on antidepressants so Consultant has referred me for Physio and Hydro therapy and 6 months follow up. Is this normal? Is there anything else that will help or that I can do to help??

Hi. You've been in the wars for a long time Jane. I'm glad you have a diagnosis which fits and it be comforting after a long period of time wondering what's going on. I have FM and also poly arthritis in the soft tissues. It's a hard one to cope with and one if the most important things I think is to be kind to yourself especially when you're having a bad flare up. Be careful not to overdo things generally, we tend to be particularly busy people who find it hard to slow down! However anyone tells you how to deal with it you are the best judge if your capabilities and limitations. Obviously you have other medical things to deal with which may or may not be complicating things. No one said about HM to me til I saw a podiatrist. She diagnosed it in my feet which explained my weak ankles as a child and even now I can easily turn them over. All the times I had bandaged ankles/feet as a child and no one thought to look further!

I don't know what medication you've been given. I take pregabilin which I can tolerate much of but it tends to stop the tossing and turning at night unless I've seriously overdone things then nothing works. Most pain relief aggravates my colon so at present I'm taking nothing. Good luck! VJ