Now I'm really confused...: Hi. I know there are a lot... - NRAS

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Now I'm really confused...

Dobcross1 profile image
22 Replies

Hi. I know there are a lot of people on here who are very very knowledgeable about RA so, whilst accepting no-one can give medical advice... here goes. I apologise in advance for the length of this post and sorry if I haven't been able to explain clearly. Diagnosed last October with RA, currently on MXT. Right from the first symptoms my stiffness and swelling has not seemed to follow the usual pattern ie no red or swollen knuckles (though all fingers sausage like), knees or toe joints - though at times I've been unable to walk. It was always the backs of my knees, the underside of my feet and down the lengths of my arms ie not elbow or shoulder joints. A few weeks ago my wrist seized and after being told I might need it fused by a doctor, the hand therapist said it was actually a tendon problem (De Quervains??) and injected it - hey presto it works!! Today I was told by a podiatrist that my ankle problem (pain was never on the ankle joint but under it) is due to the tibular tendon not the joint. Cue shoe inserts to wear. Is this a form of RA, is it inflammatory arthritis when it seems to be tendons throughout the body affected more than joints?? I suppose it doesn't really matter if the treatment is the same but I just wondered. I don't tend to see a Rheumatologist, i see the specialist nurses so I'll ask them at my next appt but that's a couple of months away so hoping someone here can shed some light... if you've made it to here thank you and apologies again for the lengthy post.

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Dobcross1
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22 Replies
Mmrr profile image
Mmrr

I have seronegative RD, synovitis mainly in my hands and wrists confirmed by MRI, but my tendons a nd muscle attachments are also inflammed. To be honest the inflammed tendons give me as many problems as the joints. Benepali seems to helping, although not without some problems too.

Sarah_89 profile image
Sarah_89

Hi, can’t give medical advice, but I asked my rheumy about this once and he said that when there’s inflammation around the joints it can also be that there’s inflammation around the tendons that are attached to that joint.

I have seropositive RA and when my shoulders ache it tends to be the pain in the tendon that prevents me from moving it. For example, I can’t lift my arm when it’s bad, but if I relax my muscles and get my other half to lift my arm then it doesn’t hurt at all! (I know, don’t ask me how I discovered this).

burnside12 profile image
burnside12

I was diagnosed with rheumatoid arthritis about 6 months ago I am taking methotrexate prednisone and folic acids I just started I'm only 2 weeks in but I hope this helps maybe they can add the prednisone to yours only take like 10 mg a day I'll be starting that today

AgedCrone profile image
AgedCrone in reply toburnside12

Do try not to stay on Pred too long. You will read on here how difficult it is to get off......it is very easy to rely on & it then find you can’t stop taking it.....not a place you want to get to.

burnside12 profile image
burnside12 in reply toAgedCrone

Okay thank you yes prednisone really does help how are you doing and are you still on medication I'm also taking plaquenil

AgedCrone profile image
AgedCrone in reply toburnside12

I’m twenty years down the line & doing well on Rtx....no other drugs needed - a long journey but right now I’m in a good place.

Hope you get settled on the right meds soon.

burnside12 profile image
burnside12 in reply toAgedCrone

Thank you

Superfloozie profile image
Superfloozie

I have PSA and many of my issues are tendon based, I have only ever had tiny patches of psoriasis way back in my teens and I know many people who have no skin involvement. Worth researching.

Esmereld profile image
Esmereld

Hi. I have had tendon problems too. Right wrist and both Achilles. It comes and goes and I’ve been told it’s common for us poor souls. I tend to strap my wrist up for a few days till it passes as it can be quite painful. Just to keep my wrist straight.

I use compression gloves for sausage fingers.

lupus_01 profile image
lupus_01

I have ankylosing spondylitis and only get pain in muscles /ligaments and tendons. Keep moving as much as you can. Short walks are good if you can. I find hot water bottles help

I have very similar symptoms as you. My tendons in ankles and wrist hurt on a daily basis.Compress socks help with Achilles tendinitis wrist support helps when things are bad . I’m serenegative.

Dobcross1 profile image
Dobcross1 in reply to

Many thanks for all the helpful replies. I had never even thought about PSA. I've been getting itchy raised patches on and off for a few weeks but put that down to increased MXT as I've never had Psoriasis - though had eczema really badly as a teenager. Will read up about PSA. Many thanks again for all your help.

BonnieT profile image
BonnieT

Dobcross1, I have joint pain and muscular pain as well and feel as you do that the muscle part is due to the inflammation. I hope you can find a good rheumy.

Dobcross1 profile image
Dobcross1 in reply toBonnieT

Thanks for your reply. It helps to find out others experiences. Best wishes.

Mandalou profile image
Mandalou

Hi Dobcross

Very best of luck to you.

That feeling you describe in your knees sounds identical to mine on diagnosis.

Always the back, a sense of fullness., a thickness is how I describe it.

Ive got seronegative RA query PSA though I dont have skin problems but my Mum does.

Mx

Dobcross1 profile image
Dobcross1 in reply toMandalou

Thanks for your reply - yes that's exactly how my knees feel!!

singlecrochet profile image
singlecrochet

Tendons may definitely be involved with RA.

turtlemom2 profile image
turtlemom2

Hello Dobcross1! I am not sure I can be of much help other than to suggest you insist on seeing the Rhemy. My mother saw one of the nurses several years ago and they misdiagnosed her. She passed away years after that because it turned out to be cancer. When dealing with RA since it is an autoimmune disease it is best to direct these questions to him/her and not the nurses. They are not specialized in this area. RA should be taken seriously as it can attack not only your joints but possibly organs if not treated or not treated properly. Did you inquire about how they diagnosed you with RA? I am just curious because it is hard to get a diagnosis a lot of the times. I too have a lot of what seems to be nerve/tissue pain along with joint pain and I was wondering myself if it was due to RA or something else.

Dobcross1 profile image
Dobcross1 in reply toturtlemom2

Hi yes they diagnosed the RA with an anti CCP test and Rheumatoid Factor test. My CRP has never really been high. I will ask to see one of the doctors next time rather than just accepting a nurse appointment. Many thanks for your help.

Pamelah5 profile image
Pamelah5

What normally happens you get referral to see rheumatologist consultant, they ask few questions about pain, how long and severity. Your then examined more bloods taken, this is before you see a rheumatology nurse , who then sees you between your next appointment with your consultant . I would phone up the rheumatologist department ask why have you not yet seen a rheumatologist consultant , explain you have only seen a nurse is there a reason why your not seeing a consultant

Dobcross1 profile image
Dobcross1 in reply toPamelah5

Thanks Pamela. I did see a doctor at the very first appointment last October, who diagnosed me. Follow up appointments since have been with nurses. I will request to see a doctor next time I think. Many thanks for your reply.

Pamelah5 profile image
Pamelah5 in reply toDobcross1

You should not need to ask to see consultant but I would in your case, they normally automatically give you appointments every so many months depending on how you are, in between you see rheumatology nurse.

I wish you well

Pamela x

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