Just got out of doctors. : Turns out I do not have RA... - NRAS

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Just got out of doctors.

Ccrowlu profile image
28 Replies

Turns out I do not have RA. I have hypermotility which can give symptoms of arthritis but there are absolutely no signs of any form of arthritis in my joints. I will be going to a pain clinic for treatment for several different things involving the hypermotility

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Ccrowlu profile image
Ccrowlu
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28 Replies
Jj01994 profile image
Jj01994

Yay!! I think...

Ccrowlu profile image
Ccrowlu in reply to Jj01994

Lol. Yes very yay!

Jj01994 profile image
Jj01994 in reply to Ccrowlu

Good!! I am so happy for you!!

Yay!! At last you have an answer. It's been a long painful road for you & hopefully from now on, you'll be able to get whatever help is needed.

Keep us informed though. I'm sure many of us would love to know how your getting on.

Ruth x

Ccrowlu profile image
Ccrowlu in reply to

Thank you! I will be a very busy bee with all the things I’ll have to do because of this new diagnosis

in reply to Ccrowlu

Understandable. But all of us will be thinking of you .

It's onwards & upwards for you now, hopefully.

Ccrowlu profile image
Ccrowlu in reply to

Very hopefully

nomoreheels profile image
nomoreheels

That's better news! Except with it being your joints it will be a diagnosis of hypermobility you've received, hypermotility is something different. It could explain your IBS type symptoms though. Very pleased it wasn't RD at your young age.

Well, upwards & onwards now, I hope you're able to start exercises soon & strengthen your muscles to help ease things. I wonder if the folks over at the HU Ehlers-Danlos Syndrome site would be able to help at all, or maybe point you in the direction of another forum who could? healthunlocked.com/edsuk

All the very best & Happy Christmas. x

Eiram50 profile image
Eiram50

Good news

Mandy8175 profile image
Mandy8175

Happy to hear you finally have a diagnosis, being stuck in limbo is the pits! Keep us informed, and be safe!

Merry Christmas!

Ccrowlu profile image
Ccrowlu in reply to Mandy8175

Merry Christmas!

helixhelix profile image
helixhelix

That's great to have a diagnosis. FIrst step in working out how to live with it as easily as possible. Still painful tho' but at least you have a name for it and your parents should understand better and help you more.

bevlin profile image
bevlin

Wondering if the two go hand in hand or if it means you will develop RA further down the line? I say this because my mother and I have RA and my youngest daughter and 9 yeAr old granddaughter have hypermobility although they don't seem in pain with it , need special insoles for their shoes etc but not much else....

Ccrowlu profile image
Ccrowlu in reply to bevlin

They said some people can go their whole lives without ever feeling pain but I️ don’t think it can cause RA. If it is in her dna she might have it later on in her life but until then if she has pain I’d tell the doctor about her hypermotility. I’ll be having to get insoles too to arch my feet better and then see a physical therapist, a Psychologist, a social worker, all in one day to get a treatment plan.

nomoreheels profile image
nomoreheels in reply to Ccrowlu

It can be associated with OA (osteoarthritis) though. This from Arthritis Research UK may be useful reading, tap on the Read more for more info on each section arthritisresearchuk.org/art...

Ruth12345 profile image
Ruth12345

Great to get diagnosis so you know what you are dealing. Take care and Happy Christmas. X

Gnarli profile image
Gnarli

Great news and the first step towards effective treatment. Wishing you all the very best for a happy Christmas and healthy new year. Hugs

J

Hi Ccrowlu - I don't know much about hypermobility, but I'm glad it is not RA. Best of luck with the pain clinic

BubbleMonkey profile image
BubbleMonkey

That's great. It's still not great that you have an issue causing you pain and will need to work to reduce that, but it must be a relief to know it isn't arthritic.

Congratulations an Merry Christmas! Good luck with the pain clinic. :)

I have a friend who has hypermotility, turns out she was diagnosed with Ehlers Danlos Syndrome.activebeat.co/your-health/w...

Mhairi54 profile image
Mhairi54

Hypermobility can cause pain and symptoms very similar to arthritis, so you may still have to follow the same advice around joint protection, pacing etc that you will have read up on when you first thought it was RA. This link may be helpful.

arthritisresearchuk.org/~/m...

Terri1020 profile image
Terri1020

Good Luck to you ! Hope the treatment goes well and you feel better!

Have a Happy Holiday!

SSC1 profile image
SSC1

I was diagnosed with Hypermobility at 16 and now I've been told I have RA, 10 years later!

Hope this diagnosis is helpful to you and you start feeling better soon.

Ccrowlu profile image
Ccrowlu in reply to SSC1

I was diagnosed with RA two or three years ago and now I’m sixteen being diagnosed with hypermobility. It’s the fourth re-diagnosis in five years.

Hello - I just looked up hypermobile and EDS here and found your post. How are you getting on I wonder? My niece was diagnosed with hypermobility at 15 and is 18 now. She seems fine but I think it was pain that took her to the doctor at first.

I’m looking into it for myself at 55! I think my family may have a rare type that has caused connective tissue problems with stretchy skin and organ slippage, constipation/ IBS.

I have had odd symptoms all my life - was diagnosed as hypothyroid and then RA and now Sjögren’s. They think I’ve had Sjögren’s since I was a child - I am definitely a lifelong autoimmuner whichever came first! I think an earlier diagnosis for my double jointed hands, elbows and knees, thin stretchy skin, overcrowded teeth, IBS and allergies etc would have helped me a lot. So I hope it’s helping you🙂

Ccrowlu profile image
Ccrowlu in reply to

I am getting along just fine now. My doctor prescribed me a new medication and I haven’t felt any pain since I started taking it a couple days ago! Usually you go to a rheumatologist to Get diagnosed but I’m sure your primary doctor could test you for it if you ask her too. She’ll test the flexibility of your joints. For example she’ll gently push your thumb back into your wrist and your fingers as well. Good luck and I wish you good fortune and happiness. Please do keep me updated on your results.

in reply to Ccrowlu

Oh this is great news to learn that your diagnosis has brought you help and relief from pain - I’m so pleased!

My rheumatologist phoned me yesterday to discuss my new symptoms and change my meds. I couldn’t bring myself to ask her about it though as encountering new more scary health problems (asthma and possible pulmonary hypertension) so we had to focus on these.

But one of my otherwise pristine fingers (with only very mild ageing wear and tear) keeps dislocating and is very sore and unstable and this has baffled me as I’ve asked here and on arthritis community and they all just say my hands look in an excellent state!

I attend pilates class and the instructor is physio trained / identified that I have a rheumatic disease from my description of poor balance and then assumed I also knew I was hypermobile. I’d never realised that my knees and elbows fit the criteria at all despite often being told by fitness people that I’m “over flexible”! I looked it up for my niece ages ago but she’s tall and thin so she fitted the profile whereas I’m short and plump! X

Ccrowlu profile image
Ccrowlu in reply to

Any size and shape can have it. And my guess would be that you are indeed hyper mobile due to your hypertension and you should definitely bring it up to your rheumatologist when you go.

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