One of the reasons I was given for my fibro, apart from stress and a family history of rheumatic conditions was that I am double jointed. I didnt know! Was only told 3yrs ago (60years old then) Apparently over stretched joints cause the pain! OK so that must be the case for a bit of pain but not for all the symptoms of fibro. Doctors are well trained and very experienced at the level of consultant but sometimes I feel that they just dont want to say 'I dont know what is wrong', or 'I dont know what is causing this'.
I have reached the stage that I dread going back AGAIN for help knowing that there is not a thing to be done. Going it alone at the mo. Apart from the support of my fellow sufferers which is great but so sorry you are suffering.
Have the best day possible. X Helen
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This is known as joint hyper-mobility, it is a separate condition to fibro although some people have both. As you say this on its own does not explain all the symptoms. Have you tried asking for an appointment at a pain clinic a lot of us find this much more helpful than seeing consultants !
I have seen the pain management consultant and attend the support group regularly. Their solutions are the usual - eat healthy food, take exercise, be mindful, etc. Very good but no cure for fibro and from what I have discussed with other users with the same or differing conditions, they have no real benefit either. We battle on. Hope you are having a good day.
if thats the case, then every gymnast must have fibro then ? i find it hard to believe thats a reason for it. maybe you have it and also fibro but hmmmmmmm
theyve already said its to do with the blood and nerves and the brain, so how does that relate to being double jointed
Hi Helen, I must admit I was curious reading the first part of your post, so iv come to investigate lol. I have Fibro & had for as long as I can remember & my grandson has recently being diagnosed as having hypermobilty, he is double jointed in all of his joints.
This does without doupt cause pain in joints as age gets the better of us all & overused joints etc. But I've never heard of being double jointed causing Fibro...they still to this day, say they don't know what causes it, so he's very pretentious even saying that really isn't he ? Like you say honey, I don't think they have a clue & in this day & age is unbelievable.
I know exactly where your coming from & have felt the same as you many times over the yrs. It seems we have to be grateful we are diagnosed & given medication, forget anything else, you have to beg for any other help. In fact I can feel a poem coming on as I write lol..
Yes, I agree. Its 'game on'. Do the best you can and try and enjoy life. Ive taken my meds and the weather is great so out I go this afternoon with my camera. Do you publish your poems? If not - have a go! I am going to try and sell some of my photos, just looking for the right website. Have a great day. X Helen
Excellent, I also love photography although I don't do much of it cos I'm normally busy building faery houses or painting but I did build a website for all my stones I painted & it was quite easy to do & looks really professional but you do have to pay if you want it online. I also used to put stuff on my Facebook. There is also Etsy you can sell them but I'm sure they take a small % of the sale. I have also got Pinterest & a board of things I've made & this can be linked to websites or Etsy & prices are on there.
Also don't forget good old eBay, you could have a little portfolio on there, so you could flick through your photos & chose 1 to buy, I think you can even do it so they are different prices. I'd love to see them. Have you got them up anywhere ?
I haven't had any poems published but I've been writing them for years. I like writing song lyrics aswel but haven't done that for a long time either.
Hello Janet, my photos are on ipernity - goslomo. If you cant find me under that name try one of my groups - HFF or happy fence friday! I have joined Pinterest but not uploaded anything yet. Facebook - I dont like it much but have a few things there. I have just bid for a flat so maybe moving soon. Dont know. My time seems to just disappear. EBay sounds good. I will get round to it along with all the other stuff I need to do. This fibro take time and energy which I resent deeply. Thanks for the info and I hope you are having a great day.
I have EDS type 3 ,so do my kids,and if you look on the Ehlers Danlos site you will see Fibromyalgia can quite often co exist with hypermobility but they are 2 different conditions with different symptoms although some overlap happens.
I also have numerous autoimmune illnesses lupus,RA etcso working out what and why things hurt gets complicated but how a doctor can say that over stretching joints causes all your problems is well......
Have a look at EDS type 3 as it is far more than just stretchy joints like gymnastists have.
Thanks for the info, will do some research. Diagnosis can be very tricky and not always correct. At least we have access to meds and other treatments. It always helps to discuss conditions with other sufferers. Have a great day. X Helen
I am so genuinely sorry to read this and I completely understand why you would feel this way. I want to sincerely wish you all the best of luck, and please take care of yourself.
I'm totally with you on the difficulty of deciding which problem causes which pain. My recent flare up was actually thought to be arthritis and also my heart which started fibrillating. Of course it was neither but one thing sets the others off. We can only treat the symptoms, which is disgraceful considering how long FM has been known to the medical profession and the percentage of people who have it. It's just not glamorous so no one throws money at it for research and many doctors just don't want to be bothered with it. Rather like ageing !
Hi, I'm sorry you are finding it hard to get answers from the health specialists. The NHS is wonderful if you got something "simple" as a broken bone or so and its something they can fix. But it's sometimes hard to get the right care if you are living with a long term condition.
I'm was diagnosed with fibromyalgia first before I found out I had ehlers danlos/hypermobility instead. It's soooo much more than just stretchy hypermobile joints. People with it have faulty collagen, if the building blocks of your body are faulty lots of problems arise : painful joints/muscles, skin problems, digestive issues, dizziness (pots) extreme fatigue, heart problems, early osteoarthritis. I'm sure I forgot to lots of other symptoms but the main thing is the pain. Doctors are not very well trained in this condition and so misdiagnose a lot of people.
Please look it up and see if you recognise your own problems in this condition.
It's is a condition that runs in families just like yours.
I hope this information is helpful and I want to wish you all the best in your journey. Feel free to ask me any questions if you are interested in knowing more
I'm finally under the care of the pain clinic now and find that they are amazing in supporting me. Hope you find the right care too.
Thanks for the info. There is so much to look into and new stuff coming along all the time. It is easy to forget that research is ongoing and that one day conditions like ours will be a thing of the past. Well - I am trying to be optimistic! Have a great day. X Helen
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