Hypermobility syndrome, fybromyalgia

[audrey123]

hi, I'm just new here and was hoping for some advice, I have been suffering for years with joint and muscle pain (amongst other things) only to have first been diagnosed with fibromyalgia, they have now confirmed that some of the pain could be caused by hypermobility in my younger years and over stretching and tearing of the muscles around the joints (I'm 45 now) my niece was recently diagnosed with Hypermobility EDS and her symptoms are exactly what I was like at her age, this was discussed and not ruled out at my recent appointment (mentioned in my letter) in fact the rheumatologist agreed that I could have it but didn't diagnose it or put this as a possibility in my letter, has any one else experienced this? should I ask for a second opinion? or can anyone point me in the right direction

[Tillyray]

Hi Audrey. Welcome🙂 Your story is very familiar with most of us..I have recently been diagnosed with hEDS -Hypermobility Ehlers Danlos syndrome-in my 50's, after 10 years+ of serious illness, growing symptoms and increasing disability...Firstly diagnosed MS -later retracted- and then fibromyalgia, but I recognised other symptoms that didn't fit those, and my joints and mobility got worse.. I saw many rheumatologists over the years and none diagnosed me. With a fibro diagnosis already, they put everything I suffered with down to that😬 even though they couldn't understand why, or what was happening with me!!.. After being unable to walk and discharged with only tendonitis by one rheumie, I sought a second opinion. Hypermobility was then mentioned a lot but nothing diagnosed.It was put in a letter to my GP but not as a diagnosis.So I did my research,and With my son having similar symptoms, I decided we should both see an actual specialist in Hypermobility, EDS. It was there that we both got our diagnosis'.Up until that point my GP had started loosing interest and warned me I would be labelled 'unfavourably' by Doctors for having so many referrals..I just knew how I felt and that I needed a correct diagnosis..

A general rheumatologist does not have the knowledge in Hypermobility syndromes or EDS to diagnose it. This is done by a specialist in the field. You are starting with the information I had. Find out as much as you can about the condition and look into your family history as an EDS may apply to you.Then arrange to see a specialist consultant. We saw Dr Hakim alanhakim.com iwantgreatcare.org at the London Hypermobility unit. thehypermobilityunit.org.uk The HMSA website and EDSuk have much information...

We are all here to support one another🙂 Please post other questions, everyone is kind and helpful and happy to help🙂 Best wishes x

[Sky-dancer in reply to Tillyray]

Hmm, I have had a recent referral to a rheumatologist rejected because my GP told him I have fibromyalgia.. I have all the symptoms of JHS, some on here say EDS.. I have displayed these many times over..

Just seen an osteopath who is going to write to my GP to state what she has found.. I'm 51 and getting worse over the last ten years.. I sprain an ankle, knee or wrist daily and jar my hip, back and neck frequently.. The osteopath has also stated that my shoulders are so used to dislocating, I hardly notice it now..

My next option is a private diagnosis.. £400 I haven't got but I'm desperate to be taken seriously!

[Tillyray in reply to Sky-dancer]

Do get in touch with the HMSA - the hypermobility syndromes association- it is run by volunteers, all of who have experience of hypermobility, EDS. Or contact EDSuk, as they can all further advise and will have a list of specialist consultants. For an NHS referral you would need a GP to refer you to one of them. Dont allow an already existing diagnosis of fibro to prevent you from being re-examined by a specialist for a potential hypermobility syndrome or EDS condition..

I was fobbed off by rheumatologists and other specialists for years, because they had no knowledge of my condition. It was easy -and lazy- for them to say 'all was fibro', just because they were clueless! But I began to recognise this and I didn't give up. It was a difficult journey, and I was made to feel terrible, and I felt totally demoralised at times.

Get support from the charities above, and support from an understanding GP. But stay strong, as these conditions are not mainstream, and you will need to learn all you can because most GP's and other Doctors will not know about it. Even after diagnosis you have to often take charge to steer Doctors in order to receive the correct tests, care and management that you need..

At least by seeing a consultant who is knowledgeable in Hypermobility, EDS, you will be taken seriously and you will get answers. But by seeing a general rheumatologist it is leaving it all to chance, and most often a waste of time.. My experience before my specialising consultant one, was seeing many consultants who simply had no idea, and they just left me to rot! Stay strong!..

Good luck and best wishes🙂

[Tillyray in reply to Tillyray]

ps..None of the hypermobility, EDS specialising consultants will reject a referral because a patient already has a diagnosis of fibromyalgia. It is already known that a patient with hypermobility syndrome or EDS can be misdiagnosed as having Fibromyalgia. The specialist I saw -who is a leader in this field- told me that ' fibromyalgia is a collection of symptoms' and that my 'subluxing joints are not fibromyalgia'. Once you have a name of the specialist consultant you wish to be referred to, tell your GP. There is also information for GP's that you can get off the charities websites. You could take it along to your GP.. I have armed GP, nurses at surgery and the surgery itself with Info, leaflets and posters 🙂 x

[Sky-dancer in reply to Tillyray]

Tillyray I have been in touch with HMSA and EDSuk but neither can help really.. I'm too far from London, am rural and have no money for transport that far anyway.. I have found out about a consultant in Dorset whose team work with eds patients aswell, and they happen to be on HMSA website too.. They won't see me because of geography, told me to try to get GP to refer me to Bath.. Believe me I have gone down all routes you mention and more..

I'm afraid in a small rural surgery, we'd be accused of being hysterical or neurotic if we started bombarding them with leaflets etc.. They know better than us "country bumkins with low intellect".. Too much fuss and we get written off.. No room for fuss.. I do what I can but I'm not daft.. I know what I'm doing hense osteopath.. Just wish she'd hurry up with the letter..

[Tillyray in reply to Sky-dancer]

Dear sky-dancer. I am sorry to hear of your difficulties. I know it isn't easy to access a specialist with knowledge of HMS, EDS. They are few and it often means travelling to see them,which as you describe, brings its own problems. It is all so hard when you're suffering and in pain, which I can totally relate to.

The more these conditions are brought to the attention of GP's and other Doctors, then it will hopefully mean they will better educate themselves about it. These debilitating conditions won't then be under-diagnosed, or misdiagnosed, leaving people suffering for years with no help.

I hope you have success getting your referral to Bath.I wish you all the very best.Take care of yourself xx

[Jk2833]

Hi I've read many articles & others experience of EDS but what actually warrants a diagnosis?

I've been scored 5/5 on the hypermobility scale but it's never mentioned by my rheumatologist it's my professor who I see about my bowel that seems to be interested.

Apparently there's research findings of a genetic link and also hypermobility with bowel issues such as IBS.

I do have other long term conditions and strong medication but I still have pain ( think I've had most pain killers out there!) but no actual diagnosis.

Thanks for any help in advance

Jk

[Tess60]

Tess 60 Need help please? Had 12 pelvic surgeries and following pelvic pain line which I can totally relate to. Two years ago in attempt to relieve pain in levtor ani muscle in pelvic floor and vagina pelvic surgeon did botox into vagina and bladder (only because some leackage and insurance would not pay for botox into vagina) In short botox traveled into small bowel and had ileus in hospital for over week till bowels would move but have never been "right" since also had to self cath for 1 year till bladder began to work, also leaving me with 14 bladder infections in and out of hospitals with no answer. Went to integrative internist doctor who diagnosed me with Ehler-Danlos with hypermobility. Felt all pelvic surgeries and still prolapse and related was related to condition, Live in Maryland, US not really many places that check into things like this and was told by dr that there was no cure so I really didn't see a purpose but pain is worse been through every bowel and bladder test just to come back sluggish. Reading your post maybe I should go see someone as it seems some of you have found help in diet and medications. If anyone knows where I should start I would greatly appreciate it.