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Could it be Elhers-Danos/joint hypemobility?

Posted , 3 users are following.

erykah71
erykah71

Good evening everybody

I am wondering if anybody could provide any advice please.

I have been signed off work with Fibromyalgia (which I'm hoping a long awaited appointment with a rheumatologist in 2 weeks will confirm) I have the symptoms of fibro, and suffer very badly with aches and pain all over my body - Stiff ankles, pain in hands, arms and shoulders. Aching legs, back neck and hips. Skin painful to touch and it even feels like my hair hurts (I cant have my glasses sitting on my head for too long as it becomes uncomfortable, and even after I remove them still feels like they are there - sounds mad I know)

Now, whilst the pain is all over I find it 10x worse down the left side of my body and the pain medication prescribed by my GP is not touching the pain.

Anyway, I have a very painful left shoulder, arm and hand below the thumb and also below the little finger which x-rays have confirmed is some wearing away there. When I told my daughter we laughed as she blamed it on my years of showing people my 'party trick' of being able to bend my thumb flat against my forearm. When she retold the story to her partner he mentioned Joint hypermobilty and EDS and after googling she called me and asked me some really random questions which turned out to be the Beighton score. I scored 7 out of 9. 

I have symptoms which are both common in fibro and EDS/JHS but I have extra symptoms not so common with fibro like varicose veins, unexplained brusing and in the past week daily nosebleeds. 

Are these symptoms common? How would I be diagnosed if it was any of these. I don't want to ask my GP as I am already paranoid that I'm going mad.

Sorry for the long post, thanks for reading and any advice will be gratefully received

Thanks

Ery xx

0 likes, 7 replies

7 Replies

  • Rebeccarockchic
    Rebeccarockchic erykah71

    Posted

    Hi erykah71, i was diagnosed with eds type lll/jhs in sept 2014, i had never heard of it myself before then. You need to ask your doctor to refer you to a rhuematologist at the hospital. The waiting list may be long but it is important to have an official diagnosis for you so you can begin your self management and that all other doctors and surgoens are aware of your conditon. Eds is diagnosed using the beighton score and brighton criteria if you research both of those on the internet it will tell you what they look for when diagnosing someone. Eds is a complex and often misdiagnsed syndrome. The symptoms and ailments are so random and that is why it is often missed by doctors and takes years to be diagnosed. I scored 9/9 i was always a bendy kid but never realised this had anthing to do with what was wrong with me. My body lacks a certain type of collegen it makes the collegen weak in ligaments to the bones move around too much in your body (the rhuemy said if he had a screw driver to tighten me up i would be fixed but he doesnt), it also effects you insides, skin, joints etc that is where the pain comes from. my body has to work harder than average to hold all the joints in place- causing me to be more tired. Some of my ailments are varicouse veins, migraines, early onset osteoarthirits, thin skin, stretchmarks, flat feet, anxiety..acid reflux thats just a few. Let me know if you have any questions smile becks
    • erykah71
      erykah71 Rebeccarockchic

      Posted

      Hi Rebecca,

      Thank you for your reply. I have an appointment with the Rheumy next week (after a 5 month wait) so will talk to him. 

      I was a bendy kid also, always doing the spilts, walking backwards down the wall into a crab position and showing off my party trick of making my thumbs touch my forearm. (That is where I get a lot of pain and my GP has said that x-rays show it's wearing away but she didn't explain too much)

      I noticed varicose veins a few years ago, my skin isn't too thin but I keep getting bruises without any noticable bumps etc. My hair is very very fine and I had to have my insteps built up as a young child because I had flat feet. My joints ache (from shoulder to ankles) but x-rays have come up clear except left shoulder and wrist. My jaw also clicks sometimes when I eat

      I have looked at the Beighton score (scored 7/9) and fall into the major Brighton criteria. I mentioned my thumb trick to my GP the other day and she asked if I could do other flexible movements. She didn't test any or mention JHS/EDS but did tell me to mention it at hospital next week - she prob thought it best not to bother speculating as appoinment imminent.

      If it turns out to be JHS/EDS I will no doubt be back bombarding you with loads of questions so I apologise in advance for becoming an annoying pain lol.

      Thanks again for taking the time to reply. I will let you know how I get on.

      Have a great day

      Ery x

       

  • Rebeccarockchic
    Rebeccarockchic erykah71

    Posted

    Hi,

    Don't worry about asking any questions. I have found support on sites and forums the most valuable in learning on my journey! I sound like a right old expert now haha its just how much research and info i have had to do myself and learn along the way, i was given a leafelt and sent on my way and thats it.You do sound very similar to myself, as every does with eds! It amazes me still the people I talk to with jhs/eds who have so many ailments and conditions like me and things that I thought was 'normal' when actually its not. Somethings we will have and some we won't or won't ever have. I try to not spend my time worrying that I will get every ailment and condtion related to jhs but I must say i have been diagnosed with quite a few little things lately!. You will find eds/jhs does not show up on x rays/mri scans or blood tests. only secondary conditions to the eds/jhs will show up llike osteoarthritis - wear and tear for example. Let me know how you get on. I am always checking in on here every day or so, we can then chat about your self management physio etc..its important to find people trained in eds as they can do more harm than good!You will also find a mixed opinion from medical professionals and lack of knowledge about it. This has been a problem and why we are getting diagnosed later in life..not the doctors faults just not been informed enough about it. becks smile

    • erykah71
      erykah71 Rebeccarockchic

      Posted

      Hi Rebecca

      So Rheumy confirms it is HMS and not Fibromyalgia which was diagnosed by my GP.

      She said it is Benign Hypermobility Syndrome and has referred me for physio. 

      Like you I was given a leaflet and sent on my way so have been looking it up on line.

      I'm a bit confused because some of the info I have seen say that HMS and EDS are the same thing, and I'm starting to worry because I have some of the Vascular EDS symptoms. 

      I am currently taking medication to treat Fibromyalgia (can now understand why it wasn't working lol) Do you take anything that helps the pain or is it all about managing the condition with physio etc?

      Thanks Becky x

  • Rebeccarockchic
    Rebeccarockchic erykah71

    Posted

    i was diagnosed with benign joint hypermobilty syndrome exactly like your self. When i went home and started my own research i also read everywhere that jhs is now believed to be the same as eds. so my doctor wrote to my rheumatologist to ask the question do i have ehlers danlos syndrome(as my doctor was not sure of the answer either). The rheuemy wrote back and said yes i do. some doctors will call it one thing some doctors another thing. what i have discovered by research is that years ago basically two diffierent medical professionals discovered the same illness and named it two different things around the same time. the symptoms are the same and the treatments are the same. Some doctors have not caught up with this yet and still use the old terms but newly trained professionals will tell you that benign joint hypermobility, joint hypermobility syndrome, ehlers danlos type lll, ehlers danlos hypermobilty, hyperrmobility syndrome are all the same thing, all the medical prof are hoping to get together at some point in the near future and look at renaming it one last time as its causes so much confusion to everyone. what i have also learnt it that the term hypermobilty syndrome is an umbrella term used for many syndromes and condtion like ehlers danlos/marfens syndrome/osteogenisis imperfecta etc. it is very complex and some of the symptoms can cross over (not forgetting like you have discovered there are many types of eds like vascular and hypermobility). For example i have blue sclerea- the whites of my eyes are blue. this is mainly seen in people with osteogenisis imperfecta, i do not have this but one of my great aunts did. i have a cross over symptom. it is difficult to diagnose someone with so many complex symptoms and ailments when there is actually no test for it. Yes some of the types of Eds there is a genetic test for but that is not always accurate. I often thought myself i have vascular eds due to the thin skin and having had two blood clots in my leg. when i read about the tick list for it the only thing that makes me think i dont is because it says with vascular you tend not have bendy joints or joint problems. if you want to be tested further then you can be referred to a geneticist/genetic counsellor. When i got diagonsed i had a heart scan to check my heart (they seemed to think this was suitable in deciding if i had eds vascular or not). My heart was fine. but i know that that is not a good enough test they have to test you proper with blood tests and dna/family history etc. 

    A lot of people wiith jhs have fibro or get mis diagnosed with it. It seems quite common. 

    The treatment that i use is physio (but make sure they understand jhs-so do not damage joints further),most physios will get over whelmed i have been to many physios and they usually just give you sheets of exercises not sure what else they can do to be honest... pilates to build up muscles around the joints. Pain meds,(yes defo) anti depressents, counselling therapy to help with long term pain, occupational therapy to help with adaptions at home or work, podiarty to be fitted with special insoles for flat feet/foot problems, relaxing meditation techniques, baths in epsom bath salts, rechargable hot water bottle, ice packs, support bandages, anti immflamtory rubs/gels, very much self help tho as pain meds dont really do anything try not to keep taking stronger and stronger ones. 

    It is good you have the diagnosis now. keeping positive is my best medicinesmile

     

    • erykah71
      erykah71 Rebeccarockchic

      Posted

      Hi Becky,

      Thank you for taking the time to explain this for me. I have been virtually stuck in bed shattered this week so unable to get to my GP to talk about this. I will be seeing her next Friday. I also start CBT next week which I've been told is good in helping pain management - We'll see

      It is confusing having different names for the same conditions - especially if the experts are not aware lol, what chance do we stand. 

      I don't want to start obsessing or fretting about what might not be, but the serious types of this condition really worry me. 

      The heart scan sounds like something I might speak to my GP about because my mum had heart problems, and passed away because of this - unfortunately, my family and I only found out about this one month before she passed as she either didn't know or hid her condition from us and we're not sure what caused this. I do know she used to dance so possible she was hypermobile. Sadly there is no-one around to ask sad

      Thanks again for all of the info and advice, I will be back I'm sure as I encounter questions. I will however try to remain positive in the meantime

      Have a great weekend x

       

  • Rebeccarockchic
    Rebeccarockchic erykah71

    Posted

    Hi,

    I am sorry to hear about your mum. It may have been she did have jhs and did not know. A lot of people with jhs have heart valve issues i think that is why they offer scans but yes i think if someone has vascular eds then the heart issues would be more severe, as you have probably read already i think the danger of vascular is organ rupture sudden death, it is very very frightening to think about.I would ask the doctor for a check up, it will give peace of mind. It is not a nice test to go threw but an important one. 

    Since my diagnosis i have really deeply looked into my family history and asked so many questions - i believe and they do say genetics has a big part to part to play in all this. i was ignorant before- i shouldnt have been but i was. 

    I am happy to help, as others have helped me on forums and by me reading other peoples stories it has helped me on my journey come to terms with every thing. I am still learning so much about this complex condition.

    I do understand your fears, i really do. It is hard to remain positive i agree but it will keep you going when the going gets tough (and the pain!!) The cbt might help with this , it helped a little with me.

    All the appointments and tests...never ending...

    Have a good weekend and let us know how it all goessmile

     

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