NRAS
22,462 members26,196 posts

What shape os your RD?

Im just wondering if there are others out there who get all the painful joints, fatigue etc but very little swelling and redness? I belong to a few forums and frequently people post photos of very swollen feet or hands all angry and red. I do get swelling in my feet occasionally and most days in numerous fingers but its very minor and doesn't relate to the level of pain I feel.

Its early days for me, only a year and its not under control yet but I used to think I must be pretty mild as I'm seronegative with not much swelling. However this condition has become so debilitating over the past 12 months and i have terrible pain in hands,wrists, feet, ankles, shoulders etc. thst Im now thinking that im not as 'mild' s I first thoughand that the swelling is not necessarily an indication of the severity of RD. I am reading something about this very thing rght now n 'Rheumatoid Arthritis Unmasked' but wondered if there were others out there feeling similar? Would be good to here? Thanks

32 Replies
oldestnewest

Hi Beelady. I feel your pain! I’m a year and a half into my diagnosis for RA and if it weren’t for my positive RF factor and strongly positive Anti CCP blood results, my doctor (rheumatologist) wouldn’t have put me on a course of DMARDS! I find it frustrating to not have any physical signs, except slight swelling on occasion, because like you said, no one believes that you could be in so much pain. However, I’ve learned to explain to those who doubt, the nature of the meds I’m on, methotrexate and sulfasalazine along with folic acid. I have learned to focus on the positive because those who are posting dramatic photos of swollen digits and joints are suffering more than I am, I would think. 😬 Even though I still have bad days, I’ve found some relief from the daily pain I was enduring, as my flares are less often. Exhaustion is never ending however! 😜 Hopefully it comforts you to know that you’re not alone! ❤️

6 likes
Reply

It's comforting to hear I'm not the only one. Years of chronic pain. Diagnosed 2 years ago after having a massively high anti-ccp (2,400), and all over pain on both sides and some holes in bones and some calcification according to xrays. I never understood the whole "flare" thing... the pain is constant for me.

The only swelling I've had was from the Methotrexate I believe, and not the RA. 2 doctors think I have RA and one is now questioning it because I haven't responded to multiple drugs now and my visible swelling is unnoticeable except for on my ankles and shins and feet many months ago.

Anyway... I share in your confusion. It's so frustrating when the drugs don't work and the doctors don't have a clue. I hope you find some answers. It's rough I know.

6 likes
Reply

I’m similar to you have burning pain in hands wrists elbows shoulders knee.

I’m sero positive as well and started DMARDS on diagnosis two years ago.

Had no swelling or redness and bloods don’t show and sign of inflammation either.

I’m off to the Rheumatologist this morning see what they say today.

3 likes
Reply

Rheumatology outcome

To increase Benepali 50mg weekly and once good RA control to start to tail off Mxt. This will be the happiest day in my life when they do this

Reply

I have very little visible swelling; just a few knuckles really. But I get stiffness in wrists and ankles, tendon problems, pain in other joints. Was diagnosed 5 years ago and am working through the meds. I argued I hadn’t got RA for the first 3 years! But the bloods and other symptoms don’t leave much doubt. Actually in my case the rheumatologist sometimes calls it Palindromic arthritis (not sure what the diff is)!

3 likes
Reply

Hello. I had palindromic rheumatism/arthritis for about 20 years before it changed to full blown RA after the death of my husband. So, for 20 years l had very painful swellings throughout my joints which came and went. Always different joints each time. During this period the swellings and redness were much more obvious. I would go for up to 3 months between each episode and as the swellings went down after a couple of days l was fairly normal!,? At this stage l took votarol only. Now that l am on methotrexate and hydroxychloroquine, even when having a flare up, there isn’t much swelling but a lot of pain. Hope this helps. Regards.

2 likes
Reply

Interesting to hear from someone who knows about the PA label. I tend to get pain in some of thesame places but asymmetrically! I’m on sulfasalazine had to stop Mtx and about to start hcq. I was diagnosed at time my husband was ill 2012/3. He died 2013 and I know the stress has been a factor. Im doing better now and hope that might improve my flares too.

Reply

Hope your new treatments work for you. I believe it was the shock of my husband’s death that changed my PA to seropositive RA. I have bronchiectasis and heart problems so methotrexate is a problem when l have antibiotics. Glad you are feeling better and hope it will continue for you.

1 like
Reply

Hi Bee, I’m seronegative too and I don’t get any swelling but plenty of pain. It seems swelling is not always an indication of severity or rather lack of swelling does not mean that the disease is mild.

I’m 3 years in and I’m a lot better than I was in the beginning but the rheumatologist feels I can be even better and is now thinking of a biologic.

3 likes
Reply

Its such a relief to hear other people say the same as sometimes I feel like im going mad. Im still struggling to come to terms with it as its been so debilitating and yet I can feel a fraud as I have very little swelling or redness (though do get some in hands and ankles) and is such a strange condition. The pain in numerous joints and fatigue has changedmy life in 12 months and although im on Mtx injections and hydroxy plus pain killers etc. Nothing much is working as yet so its out of ontrol.

6 likes
Reply

Hi. I understand what you mean. After the original swelling went I dont get swelling, but oh my goodness the pain, burning and fatigue is off the scale sometimes. Im sero neg also. My reumy says thats sometime how RD is in people. Im on 3 dmards. I get frustrated when people say they have the same as me and they are not on any meds and dont have a rheumy. As its no longer visible other than my walking stick, I dont say anything unless Im asked.

6 likes
Reply

It is frustrating when people say they have arthritis too but not on any medication. I often say it’s inflammatory disease these days as fed up trying to get through to them that what I have is different to their arthritis.

2 likes
Reply

Hi Ruth...yes im pretty similar to you. On Mtx and hydroxy and find the pain and fatigue debilitating but rarely get swelling or redness. Invisible illnesses so difficult. I try and say RD as already had people saying oh i get that in my finger etc so Im quite adamant about talking about autoimmune disease and symptoms. The book i mentioned above tslks alot about importance of calling it RD too.

3 likes
Reply

Yes I say Auto immune but people still don’t get it. Even my family don’t really understand it. I say R A and always someone says well I have that and I taken ibuprofen etc. ...

To be honest it’s not worth trying to really explain it, people eyes glaze over and you know they’re not really interested. Just part of this lovely condition.

2 likes
Reply

My rheumy said to say its RD as its a disease that has arthritis as part of it, but that makes no difference. Ill try your idea. I would be happy not to say anything but it quite difficult at times.

3 likes
Reply

I was diagnosed in 2004. After appointments with my rheumatologist I get copies of the letters he sends to my gp and other interested parties, and he describes my RA as severe. I have only ever had minor swelling although have acute pain in my neck, shoulders, lower back, elbows, wrists, hands, ankles and feet.

1 like
Reply

Hi Helen..i feel similar. Onlyba year in and on so much medication but nothing really working yet. Currently trying Methotrexate and Hydroxy plus pain killers etc. I struggle to move around at all some days and feel defeated by either the pain or the fatigue. Have been unable to work. Dont get much swelling or redness though so this invisible illness is really invisible which is hard. Good to hear others in similar boat if you know what iI mean.

1 like
Reply

I feel the same - somebody with similar symptoms. I had to give up work before my planned retirement date. I managed to work without too much time off through the early days of getting the meds right, but in the end, even though I’m now on the right meds, the increasing stress of the job forced me to stop working.

Reply

Hi. Well I don't actually have a diagnosis yet, but I do get all the painful joints, fatigue etc but very little swelling and redness.

Some fingers swell a little and some joints gets warm to touch. But all tests are negative. So I have 5 doctors telling me that it looks like some sort of inflammatory arthritis but we can't find anything on the tests so we can't really help you.

1 like
Reply

I am seronegative so nothing on bloods and treated on symptoms alone. About 30% of peopke with RD are seronegative I think.

2 likes
Reply

yeah so I can understand from this site. But I am from Denmark and unfortunately we apparently don't really treat seronegative.

Next step for me is going back to a rheumy who are willing to treat me with prednisolone (which has helped when tested it earlier). The Rheumy doesn't like it as a long term treatment, but she says if GP, Pain clinic and other docs can't/won't do anything to help my pain she is willing to do so rather than just leave me to cope on my own

1 like
Reply

Theres a lot of evidence and research around seronegative RD. Maybe you can collect some good quality papers and sare it with medics?

2 likes
Reply

mjf09 that must be hard as the symptoms are so debilitating even with sero neg. Im not in remission yet after 15 months and in a lot of meds, mix of dmards & analgesics.

2 likes
Reply

Thanks. I am hoping that prednisolne will help and I after a while can convince the rheumy to try DMARDS though it seems like a kind of backward way of getting proper treatment

Reply

Such a good thread this, thank you Beelady. Like you seronegative and don’t have swelling or redness, but pain, definitely, especially neck and back. The reading you talk about, RA Unmasked, is it on this forum? As it sounds interesting. I’ve been diagnosed for 10 years now and remained on triple therapy, with highs and lows of flares. It’s definitely comforting to know of others in the same boat. Take care. Candy

1 like
Reply

I was seronegative for 25 years. I had swelling and redness. But medication (Diclofenac and Sulphasalazine) kept it under control. I've now been seropositive for 5 years. Have Methotrexate and Leflunomide. I also have Vasculitis for which I take Prednisolone and Rituximab. I hope you all get some relief evenually.

Reply

Thanks Candy..yes its all so confusing. Yes the book RD unmasked is on Amazon. New book wtitten by Kelly ?( Aka RA Warrior Website) I think ots good so far thpugh only just started it.

2 likes
Reply

Thanks Beelady, will have a look. Funnily enough had meeting with Rheumatology nurse this morning who was more focused on swelling of joints. Luckily have been referred back to Rheumatologist, who looks at the bigger picture. Take care. Candy

Reply

Burning sensation. Cramping. I see swelling in my feet & hands, but never any redness. I'm sure I have another form of arthritis & not just osteoarthritis. Blumming heck try telling that to a GP, as I can never get to see my own GP 😬

Reply

My mum had osteo and was very similar to what you are saying Ruth, she would take pain killers before she went to the shops otherwise the pain was bad. Hers was a burning clown her legs and wrists.

Reply

I get all the pain and symptoms but none of the swelling or blood markers.

1 like
Reply

It seems pretty common amongst people with RD Les.

Reply

You may also like...