Hi, new, confused and a little annoyed

Hi, my name's Sarah and I'm from just outside Rochdale. To be honest I really don't know where to start. I've always had aches and pains in my legs, ankles knees etc. Sometimes it would feel as though my shinbone was actually aching but it was put down to 'growing' pains. As I got older so the pain became more intense, especially at the base of my back. I've also had a lot of trouble with my ears, the right one in particular. My ent consultant,who's brilliant with me even if I've caused him sleepless nights (his words lol) had often said that there was something else going on that may explain my ear problems. 6yrs and countless ops on a friend asked if I could have fibromyalgia. Went to GP who did loads of blood tests, all normal, and was told yes it was more than likely fibro. My cousin got in touch when she heard of this and told me to ask about EDS as she has EDS 3 and my mum and grandad more than likely had it. When I was referred to Rheumatology I mentioned this as I had quiet a few symptoms such as my knee dislocates, my thumb does and my shoulders 'drop'. The rheumatologist looked at my hands, pulled the skin on the back of them and said no it wasn't eds, but probably benign hypermobility, and fibromyalgia. When the report came there was no mention of the hypermobility apart from my thumb and knee, nothing about EDS, apart from saying my skin was fine with no scars. She didn't ask about scars or healing which I have had problems with. She said as I had 16/18 tender points it was probably fibro. I don't know where to go from here as I just feel that it wasn't looked into properly. Don't get me wrong, I don't want to have something else wrong with me, but I just want to make sure I'm not being fobbed off. Sorry if it doesn't make sense lol

Well now that I've bored you silly with that saga of a post, I look forward to chatting with you all

Sarah xxxx

8 Replies

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  • Hello Sarahhm. I am sorry to hear you're having a difficult time,I know how hard it is..Your story sounds like mine, and many other peoples for that matter..

    I've been ill all of my life and had all sorts of diagnosis mentioned along the way, with fibromyalgia being a sticking one several years ago..It wasn't until,like you, I came across EDS and did my own research..If you read my posts you'll see that I'm confused by what the rheumatologist has written about me..

    I have had excellent support and advice on here😀..This is a very helpful,caring community..

    I intend to get referred to the private, Hypermobility centre in London. I'm told they will do a full assessment and give a diagnostic letter stating what needs addressing.This is what I desperately need if I am ever to hope of getting any possible treatment or the correct care, as I have numerous symptoms affecting various body systems and some are either unexplained or have a dual diagnosis..I have seen different consultants over the years who have not been able to join the dots and I have been left, abandoned with illness and disability..

    It is often a very long road when you have a 'Complicated condition' where symptoms and tests 'don't fit in the box'..But you have to become strong in your mind and push on to get answers and the help and care you deserve.

    I wish you all the best x

  • Thanks for replying Tilly. It's ridiculous that we are having to fight so hard just to get a diagnosis never mind proper treatment. I'm not sure where to go from here now as I think rheumatology have discharged me back, although the letter says they'd be happy to see me again if the GP referred me back. It took over 3 months to see them the first time so goodness know how long I'd wait again. I really hope you get the answers you deserve hun.

    Love and hugs

    Sarah xx

  • Hello Sarah, I am diagnosed with Hypermobility syndrome which is basicly EDS3. there is so much conflicting information about HMS and EDS some drs say its the same thing others dont, I see that your in Rochdale I live near Bolton Myself, I was diagnosed by writington hospital which is a centre of exelence for the many diffrent types of athritis, if you are unhappy with the opinion you were given maybe you could ask to be refered over to Wrighington its not that far from you, I would add that it took 12 months and two appointments there to get my diagnosis, and I did think after the first appointment that was it, they just told me I needed a knee replacement but couldnt have one as I was too young they never said they were going to send for me again but 6ish month later another letter to attend came for me, I went not knowing why they had called me back, I had a consultation with a lovley Dr much better than the first one I saw, she explained my condition very well to me and also the other symptoms with my stomach it was a light bulb moment for me and although I got diagnosed I was pleased that all the pains I had been complaning about for years were finally making sense and I wasnt imagining it, you will find for many people a diagnosis comes much later than it should do but because the symptoms can be quite varied it is a difficult condition to diagnose,

    hope you get the answers you are looking for

    Best wishes

    Paula x

  • Hi,

    I belong to another healthunlocked forum but saw your post by chance. I am feeling left in the dark a bit. I have stomache problems, mainly intersussepcion (adult variety) which is a sort of bowel prolapse and I recently saw a gynaecologist for 2nd opinion on an operation that my colorectal consultant said might be better done transvaginally, hence seeing the gynaecologist. Long story short, the gynaecologist doesn't want to do,the op, but examined me and said in her opinion I probably have a connective tissue disorder - she commented from personal experience I think a she clearly 'appears' to have something like EDS. I asked her to mention it in her letter but she did not so all I can do is say 'the gynaecologist said she thinks '.....not very helpful. I have seen rheumatologists time after time because my rheumatoid factor blood test result is always sky high and various GP's are freaked out by it and send me off to rheumatology. The consultant there so far has found nothing conclusive for rheumatoid arthritis but he has said it is quite likely to occur in the future. Anyway last time I was there I mentioned that my eldest daughter has hypermobily syndrome, diagnosed when she was 10. He did some examination of my joints and said I was older and stiffer now but it looked a lot like she had got it from me (I could bend my knees backwards as a kid). But again he did not put it on his letter to my GP.

    Yesterday I had to see my GP as I could hardly walk due to a new symptom of hip pain. My GP suspects hip instability and I was sent for an X-ray. Despite my telling him the pain didn't come from stiffness but almost the opposite, my hip feeling highly mobile, he was still surprised on examination that my hip mobility was so good - duh don't they ever listen.

    Anyhow I am beginning to think all these things add up to a bigger picture of me having some type of EDS or similar. I would want to know for the sake of my kids. My daughter received far better treatment and support from hospital once a diagnosis was made. How can I get a proper diagnosis, not just informal opinions which never get you seen by the right place?

    Sorry about the long post and thanks on advance for any replies. I guess it comes down to no-one wanting to give a formal opinion which might lead to more expense of referrals.

  • Dont be sorry. I have had issues since birth. I am 52 and i was 44 when i got diagnoses. It has been an up hill battle. This disorder is put back over and over with me because no one understands it where i live. I have to drive 2 hours away just to have someone with knowledge of it. I have put my faith in the medical profession only to find myself juggling trying to stay out of pain. Its made me feel desperate, alone and unloved. I hope u find the strength to push forward. I have. God has brought light and knowledge to help me get through this. Stay strong

  • Hi everyone, I'm Angelspike and I have JHS/EDS-HT. I am 58 in April and look forward to chatting with you all. In fact I've just home from yet another long visit to A&E and am trying to unwind now so as can try & some sleep! I am sure you will all understand that feeling! :) X

  • Hello Angela.I came across your post from a 'like'..Please write a post with a new heading if you would like to,and that way it will be easily seen by everyone.🙂

    I am sorry to hear you've been in A&E and I hope you are ok. It's a daunting place to be for any reason, and with this condition it can have a mixed success rate, but we are grateful for the emergency intervention all the same..Being back home always feels so welcoming, so I hope you're able to relax a little now.

    Sending very best wishes x

  • Hi Tillyray! Thank you for your lovely welcome. It certainly has been a very long , winding road & all uphill so far - still tonnes more bloods , MRIs, CTSs, Tilt table and obvs the extremely hard to get in UK one - standing MRI for Chairi. Still soldiering on though but excited about the new nosology announcement due out in March. X

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