Maybe it’s not RA

Since my first post 4 days ago, the response on here has been very touching. Thank you for all your support and wise words. However, now I have read other people’s stories, I’m thinking it’s possible that I have something else. Admittedly my blood tests did indicate RA and my GP seems certain enough to refer me to a rheumatologist. But I’m reading about people having pain in their feet or hands, sometimes the odd finger or wrist, others it’s a knee. My problem is I have pain in every single joint in my body. Could that mean something else?

Some months ago I ended up in A&E with excruciating pain in my left shoulder. That day I was at work and within the course of the day went from having a little twinge in my shoulder to feeling like it was dislocated and every tiny movement sending me reeling. The Dr said I had tendinitis, gave me a rather nice cocktail of drugs and sent me on my way. A couple of days at home on Naproxen and painkillers and I felt much better. A couple of weeks later the exact same thing happened to my left wrist/hand with my hand swelling to almost twice the normal size. Again naproxen and painkillers and a few days later I was on the mend. From that day on though, I had pain in every single joint. Two weeks ago I had my right shoulder go through the same as I experienced in my left.

I have a fairly high pain threshold so the constant joint pain, while pretty awful, is bearable. I can’t say the same for each of the shoulder and wrist episodes. These were horrific and I’m assuming could be the “Flare ups” I’m hearing about?

Added to this, for sometime now I have struggled to find any motivation to do anything. Some days even the simplest task seems like I’m climbing Mount Kilimanjaro. I’ve lost count of the times I have come out of work and said to my partner “I’m exhausted” it’s almost become a joke. But secretly, I could cry.

I think what I’m asking is, do you, the ones that have it confirmed and live with it day in and day out think this sounds familiar? I suppose I’m holding onto the hope that I have something else, something curable.

I have no experience of anyone with RA, so I have nothing to compare what I’m going through to. Except you lovely people.

Any feedback gratefully received. Anything I hear has got to be better than wading through treacle in the dark xxx

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27 Replies

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  • The tests seem conclusive. RA mainly is swelling stiffness and pain. Fatigue and being exhausted is another.

    Maybe you are me .I tried to deny what was wrong. But help from docs will get it under control x

  • Fatigue and exhaustion are close companions to the pain from RA.

  • Yes that's what I meant above. They were my most annoying symptoms. But it took me a long time to admit and realise that yes I had RA xx

  • I was the same way. When they first sent me to the Rheumatologist, I had extremely high inflammation markers, but no other indications. They called it Inflammatory Arthritis, but nothing specific. To my mind that gave me an out. I thought it would get better and go away. Originally I joined the list, but then I quit reading and responding. I spent a over year and three appointments with all the signs and symptoms increasing-with a Rheumatoid Doctor who never checked blood again, and I fooled myself. Finally it got worse and my GP sent me to a different doctor. I am now RA Sero-positive. I am past denial now, because the chronic fatigue is taking me down. Right now I do not have much interest in doing anything. I hope this passes.

  • It gets better with treatment. You just need patience to get the right treatment plan x feel better soon x

  • It is possible that you have something else, but only a doctor can tell you for sure. However what you describe does sound pretty recognisable as RA to me...positive blood tests, plus responding to anti-inflammatory, plus widespread pain = inflammatory arthritis of one sort or another.

    Two thoughts tho', although RA is not 'curable', it is for the vast majority of people a manageable disease. Forums like this one are not completely representative, with more posts from people who have the worst disease, are having problems, and the newly diagnosed. Those who are doing well don't post much as little to say.

    And second, I'm afraid that the early stage are wading through treacle in the dark. These sorts of diseases are not straight line ones where someone says immediately, you have X, take pill Y for 7 days and it will all be fine. Just try not to let it stress you too much, and take it step at a time.

  • Thank you helixhelix. What a really good point to make, that the ones that are doing well, don’t generally post.

  • Hi Lauranorder,

    I'm one of those who Helixhelix mentions who don't post often. Diagnosed in 2008 with RA and now on a mix of 3 meds I am in remission. I have had one knee replaced an will be having the other one rpl in December, but that is mainly due to Osteoarthritis. So, hang on in there, it can be a bit of a journey!

    This site and its members is great for advice and support for whatever stage you are at with this disease. You're never alone.

    Wishing you all the best.

    Barb x

  • So happy to hear you are in remission! Can you please share more of your story? What medicines are you taking? What were your symptoms? Any lifestyle or diet changes?

    Thanks so much, be good. Penny

  • Click on Smiler53's profile and you'll see she's given her story there

  • Hi Penny, It started in my fingers, they were very painful and stiff. My doctor did a blood test and it came back as Zero Positive RA. He sent me to see a Rheumatologist who put me MTX starting at 10mg increased to 22.5mg then down to 20mg and Folic Acid. Some months later they added in Hydroxychloroquine 200mg x 2 daily. Moving on another couple of months, they added Sulphasalazine 500 mg x 1 am 2 pm. I had a short spell on steroids when my knees got bad. Gradually my inflammation levels dropped over the years, a few flares here and there. I also take Paracetamol as and when I need it. One knee replaced Dec 2016 and the next one due to be replaced Dec 2017. That is where I am at the moment. No special lifestyle changes, apart from wearing insoles in all my shoes to correct my feet. No diet changes Please see my profile for further info. Best wishes. Barb

  • Your story sounds very similar to mine at the beginning. I too was diagnosed with tendinitis the first time I went to the GP with pain in my shoulder. It took several appointments at the GP surgery with different members of the practice each time with a different part of my body affected before I got an appointment with my own GP. She was very much on the ball and gave me a thorough examination and ordered blood tests. She then referred me to rheumatology where I was officially diagnosed with severe rheumatoid arthritis. This was 15 years ago and I was in denial in the beginning. I made the mistake of not following through with my hospital appointments and had to go back to my GP a few years later to be referred again. This meant that I did not get the aggressive treatment I should have had early enough and this has resulted in joint damage. So please, no matter how much you want to believe the diagnosis is wrong, don’t make the mistakes I have made.

  • .

    Don't think you'd be here — communicating on this forum], Lauranorder — unless deep down inside you already knew the truth. 🤔 😔 😯

    We need 'denial' 🙅 for as long as we need it. 😌

    It serves its purpose. 👍

    Till we're ready to accept the realisation. 😌 🙏

    .

    Kindly, avoid pitfall of 'burying head in hole' 👩 🕳 .

    Continue being proactive ✔️ , asking questions ✔️, researching 🕵️‍♀️ 🔎 📚 . ✔️

    There's abundant realistic hope. ☺️

    'RA Newbie Introduction': healthunlocked.com/nras/pos... has resources to jumpstart you — to ponder. 🤔

    Wishing you the very best, Law&Order (👩‍⚖️ ⚖️ ), at the outset of your lifelong journey. 🙏 🍀 🌺 🌞

    .

    .

    Aside:

    Kindly 🙏 reflect 🤔 — there have been people (& still are people) on forums who have done well (& continue to do well). 🤗

    They have left their messages 📝 & shared their information 📚 .

    Seek 🔎 them out. Seek out their words 💬 . 👍

    .

  • Hi Lauranorder

    I too have confirmed RA and suffer some of the same additional symptoms as you and I am being treated for my RA.My GP thinks I may also have fibromyalgia ,rheumatologist says no but a lot of symptoms of fibro mirror RA so its possible, but as yet unconfirmed.

    Speak to your GP and if he/ she feels further investigations are needed then they will organise these.

    Unfortunately,both conditions are not cureable they have to be managed as best you can,and the better they are controlled the better it is for you.

    Good luck with the diagnosis and hope all goes well for you.

    Crusee

    XX

  • .

    Bit on fibromyalgia 'diagnosis/ labeling': healthunlocked.com/nras/pos... (Merely supplemental thoughts 🤔 that may be of interest, Crusee.)🙏 🍀 🌺 🌞

    .

  • Whatever you do don't cancel the Rheumy appointment because you 'feel' it may not be RD! The beast has many faces & rarely does one person's symptoms mirror another's though it is more common to have bilateral involvement in the hands &/or feet. RD can affect any joint though & wading through treacle in the dark is also a very common symptom, though not a technical term it is a very descriptive one!

  • Thank you nomorehills. I definitely won’t be cancelling any appointments. In fact, It can’t come quick enough. I’m desperate to find out exactly what is going on and get some answers. I’ve had a letter from my hospital saying they have received the referral made by my GP. As a rule, does the rheumatologist tend to see you quite quickly or will there be a waiting list?

  • Well that's a start! In theory, & according to NICE guidelines ideally you should be seen within 12 weeks but Rheumy departments are notoriously busy so it's not always possible unfortunately. But let's try to think positive & trust that you are seen within the recommended period because it is important if you do receive a diagnosis that you start treatment to dampen down the disease.

    I don't know if you've read this Inflammatory Arthritis Information Pathway 6 step guide from the NRAS but it might be helpful for you nras.org.uk/1-recognising-s...

  • The RA blood tests that the doctors order are accurate for the vast majority of people... but there are a few people (like my hubby & me) who tested a false positive.

    I wish the newest test available for RA was available back when I was first diagnosed. This test (Jointstat) was invented at the University of BC and the final double/ blinded/ placebo trial was held at the University of Sask. My hubby's rheumatologist was able to have my hubby's blood be analyzed after the the final trial phase. Anyways, because of this test, my hubby's RA diagnosis chaged to pseudogout.

    Jointstat is called IdentRA in the UK. The Canadian government medical plan does not pay for this test because the other tests are cheaper... and just as useful for the vast majority of people....but for only $50, I would have never been diagnosed with RA.

  • I have now had Ra for two years and my initial symptoms mirror yours. I to had shoulder problems and ended up in A and E with similar diagnosis. My symptoms included pain all over my body. One week it would pain in hands and feet on one side of my body and next week would affect other side. Also had jaw and shoulder pain intermittently. This was when I went to my gp and had blood tests which confirmed Ra. Also constantly exhausted and felt as though I constantly had a flu like virus. After hospital referral I have beeb on methotrexate and hydroxychlorine which settled things down. Consultant now thinks I am in remission. I still get a few aches but they are not debilitating any more and I rarely take painkillers. It's a horrible disease and I am still worry about what the future might hold. But most of the time I can lead a relatively normal life. I feel as though I am one of the lucky ones as many people suffer greatly. Good luck and hope you get the best treatment.

  • Thank you bernieq. I suspect I’m a little in denial, that I can’t possibly have this life changing condition. But hearing people say, yep this all sounds very familiar and that is just how mine started, helps me to come to terms with it. X

  • Similar to most of these posts & I too put my head firmly in the proverbial sand for a year after I was diagnosed in 2015. Think it’s a natural reaction but listen to your body, don’t ignore the signs & symptoms because the sooner you start treatment the more chance of less damage & getting back to normal xx

  • Yes I have been all through the pain you mention, it’s all the things that means RA. Medications helps but it’s all try and error ,thinking of you x

  • Hi Lauranorder, (Love your name!) I have the same exact thing. It travels, when it started I was going to pt and each time the pain was somewhere different (going on a 5 year journey trying to remember where it started). Anyway the pt suggested I let my rheumy know there was something else going on. So my ruhemy did blood work and found out I was Celiac. It seems to me when I get glutened it affects every part of my body. Now I know most people with celiac have stomach and intestinal problems, but I don’t. Including RA and celiac I’ve been diagnosed with fibromyalgia, osteoarthritis, osteoporosis and Hoshimoto (thyroid) My present cocktails are methotrexate, Acterma (because enbrel after a while and Humira didn’t work at all), diclifonac, synthroid, folic acid,and other supplements. Each day is a new adventure. I have had my left hip and knee replaced and trying to decide what’s next. Left shoulder has no rotator cuff only the right is more painful. My toes have decided to rearrange themselves on my left foot and 2 toes need to be broken in 2 spots each. I’m sorry, didn’t mean to ramble, bottom line you are not alone and I wish you easy and pain free days.

    Terry

  • Hey I had the same thing. Started with tendinitis in both feet then spread to my hands, knees, shoulders. By the end of it all every joint was swallen. Methotraxate for a year and feeling much better.

  • I think everyone holds on to the hope that they don't have RA. It is a hard diagnosis to wrap your head around.

    The symptoms you are describing does sound like RA or PSA or another type of inflammatory arthritis. You're still in the early stage of being diagnosed with this disease. My advice to you is to keep reaching out to us on this forum, we will help guide you during this confusing time.

    I believe everyone should follow their doctors advice because they are the experts in rheumatology. If your diagnosis is going to change, your rheumatologist will notify you. How do I know this?...because this is what happened to me. I was angry for taking all those RA drugs when I found out I didn't have RA. It wasn't until I discovered the RA drugs are also used for other inflammatory disorders,... thats when I calmed down.

    All the best to you

    Sue

  • You can have RA in every joint of the body. I myself do as well. Even in my jaw.

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