OA, connective tissue disease and totally lost

Jenny1

Hi,
I have OA which has become troublesome in my spine, knee,hands and feet over the last few years.In that time I have become hypothyroid, developed asthma and have low iron, B12 and vitamin D.I go to physio multiple times a year when joints or tendons flare.Have been to two rheumatologists in a teaching hospital and had poor experiences. I then paid to go to a private consultant. I was told that as my arthritis was not inflammatory I could just continue with physio and painkillers (can't take antiinflammatories).I have had some steroid injections and was told l could have more but it's not a good idea at my age (in my thirties).I work hard to keep moving and stay strong at the gym even though it often leaves me sore. I was sent a copy of the consultants letter and she said she thought I had a connective tissue disease but didn't know what it was.She just advised keeping doing what I'm doing and there is no follow up. I feel even more lost now and am so fed up of things going wrong and trying to manage on my own. Sorry for the big rant. Is anyone else in this situation? .

stickywicket

I'm not in your situation (I have RA and OA) but I can understand your frustration. You seem to feel you have an autoimmune disease whereas the rheumatologists don't. My extremely limited understanding of connective tissue diseases is that some are autoimmune and some not.

Please feel free to talk to us here. At least we get the OA bit if not the rest. I don't know if these sites will be of interest.

https://www.inspire.com/groups/connective-tissue-disorders/

http://www.rnhrd.nhs.uk/page/93

Jenny1

Thanks for the reply and the links Stickywicket!.
I will definitely be looking them up.
I do have two confirmed autoimmune conditions and once you have one it is easy to get more. The rheumatologist acknowledged this.Every other doctor I have been to asks if I have been to a rheumatologist yet when I go to one they can't help.

stickywicket

The only other thing that comes to mind is that there have been some trials of methotrexate for OA patients but I don't think it's prescribed (yet?) outside the trials and I think it has to be a specific type of OA in the knee. Anyway , here are a couple of web articles on it:

http://tinyurl.com/kq4978q

http://tinyurl.com/orx3zxm

Rebeccarockchick

Hi Jenny, Sorry to hear of your frustrations and difficulties to get an accurate diagnosis. It is part of the journey to know exactly what is wrong then we can deal with it and manage it. I have a connective tissue disease that is the opposite end of RA. I have genetic Ehlers Danlos Syndrome. This has caused early on set of OA in many of my joints, i am 35. I also suffer with quite a list of other medical issues and most recently Asthma is my newest diagnosis. What I have discovered is there is a lot of tissue diseases and it is quite difficult for specialists/Doctors to recognise them. It is common for people to have to fight for diagnosis of ehlers danlos and do all the research themselves etc. I would keep pushing for answers as confirmation and information are two good tools for you to have. You have enough to deal with, with everything going on with out this playing on your mind all the time. I wish you well and really do hope you find some answers. becks - those links are good what stickywicket sent I have just joined up my self..thank you stickywicket

Jenny1

Hi Becks,
Thank you so much for your message.You have hit the nail on the head. It is incredibly frustrating to know something is wrong but not be able to put a name on it. It seems a small thing but it is hugely important. Hard too when you go to a specialist and are hopeful they will have an answer and you don't get one.It may take some more time but I am determined to figure it out.
The links were indeed great especially the forum as the storyies ring true for me, thanks Sticky.

stickywicket

You're both very welcome