Hypermobility syndrome

[Crazycatlady_101]

I’m 27 and been struggling with both my knees and elbows since I was 25, I have pain everyday in these joints ! Some days better than others, but it really tires me out! I’m struggling with simple things such as going up and down stairs and getting my leg in the bath to take a shower! And as embarrassing as it is I’m struggling to wipe myself after the toilet, for the past couple of weeks the pain has increased in my right elbow and is now in my wrist and fingers, not a lot in my wrists and fingers but I know it’s there when I turn or try to pick something up or open etc.The pain in my elbow is restricting me and is so painful when it cracks! I only take ibuprofen which I buy. I was diagnosed last March with hyper-mobility syndrome and flat feet, I’ve brought some trainers that the rheumatologist suggest which are wonderful and help but other than that I was left to it. A couple months ago I went back to the gp because I was really struggling, I used to cry before i started work because I couldn't move around to get ready, was finding it difficult to brush my hair and clean my teeth, at work it was such hard work, i was on my feet all day I couldn’t take anymore so had to reduce my hours. I’ve been lucky enough to change my job where it is less strenuous and I’m able to sit and stand, the pain and stiffness has reduced so much but it’s still there! I went back to the gp before I changed jobs (a different doctor this time) to tell them I didn’t feel quite right and that I felt there was more to it than just hyper-mobility syndrome. From a previous blood test it showed I had inflammation, so the dr sent me for a liver scan & the doctor suggested I try a course of thyroid tablets As I was borderline underactive and vitamin b to see if they would help, I took them, I didn’t feel any different, went for a blood test, she said I was just being tested for vitamin b, told the phlebotomist that it was for my thyroid aswell for her to tell me it wasn’t, I’ve not been back since! I feel so disheartened to keep waiting months and months for tests and results while I’m in pain all the time! I feel lost and stuck!

[Hidden]

Hi

I really feel for you. Is there another surgery you could go to instead but also complain about the treatment or lack of that you've had? Being in pain is horrible, I'm in pain 24/7 and have an hour or less sleep per night due to pain. It really does depend which Dr you see . Pm me if you need to. . Sending you lots of healing hugs. Lynne xxxx

[cyberbarn]

It sounds like you need to make a couple appointment with a GP, and take a list of your symptoms and write down your questions and not leave until they are answered.

I wonder if your elbow problem is 'tennis elbow'? There is a type of splint that can help with that.

doctorarthritis.org/product...

Have they tested for antibodies for the thyroid problem? An underachieve thyroid can certainly make pain more painful. It would really help you if they could give you a definite diagnoses on that and a treatment plan. Then at least you know where you stand.

Good luck!

[Hidden]

My daughter was diagnosed at 27, whilst pregnant with my now 10 year old grandson and she had been suffering since she was 7, with no help whatsoever from our GP and MSK/Osteo specialists who told is it was Juvenile Arthritis and her weight (she was overweight). It took being referred to a Professor of MSK for her to have one look and tell her what we'd known all along! She then saw a specialist afterwards who also diagnosed a form of EDS and Hughes Syndrome, all of which are autoimmune diseases and don't show in bloods unless you're in a flare up.

My younger daughter has also suffered since she was 7 and I have since I was around 5, nobody wants to know other than our GP doing the basic bloods! So, I would say, tell your GP that you want referring to a rheumatologist... although we know that we have to be referred to MSK first, to be referred to RH, which is a waste of money! It is YOUR body, only YOU know how you suffer, YOU need a proper diagnosis and treatment!

[strongmouse in reply to Hidden]

That sounds like good advice JayneGP. Hypermobility and pain can be caused by a range of conditions and it is important to track down the right diagnosis.

Ask your GP for a referral because of your ongoing pain and symptoms not responding to current treatment.