Possible Rheumatoid Arthritis /autoimmune

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Hi


I've never used the NHS as much since coming to UK so I'm not sure how it's is meant to "work". I'm hoping to possibly hear some tips and perhaps encouraging words as I'm a bit tired at the moment with my situation.



A long story short, I have been having joint pain since late November. Originally I had my right knee hurting, then left and now i have also both elbows aching. In December for about 2-3 weeks I could barely walk due to the pain in my knees. No swelling/no rashes, no other symptoms apart from the pain. I don't have any other health issues and I'm a 30 year old woman and not over weight either (they suspected osteoarthritis as a possibility). I didn't do anything to cause any trauma to my joints.



I was given Naproxen which started helping a bit on day 4ish. Then I had pain pretty much after the Naproxen but not as much so I could move around which was a relief.



I have been to back and forth to GPs, I've had blood tests, X-ray and ultrasound. X ray had some minimal joint base damage and ultrasound had a very tiny cyst (they suspected baker's cyst) which the lady who did the ultrasound said it is very minimal and she does not think it is the cause for the pain on it's own.



Couple of weeks ago I got some more results for blood tests and they informed the Anti CCP results were abnormal and they were to refer me rheumatology. I've just now got my referral and appointment booked for end of March which seems like a decade away. I've already rang the hospital to see if there are any cancellations or possibly earlier appointments but unfortunately not.



I guess my thread here is to ask whether anyone has been in similar situation. In a way I have had lots of tests done etc. but at the same time I feel unbelievably tired of not still knowing what is wrong. In the beginning I particularly had to almost demand more tests done as pain was the only symptom and it almost felt like if they can't see it it's not there. I suspect perhaps it is an early RA from reading online (I know you should never google but I cant help it) but I never had any issues in the morning in terms of joint stiffness etc. which seem a typical symptom.



I guess I can't really get private medical insurance as this would be considered a pre-existing condition/issue? I don't know if there are any possible clinics which could possibly help (I have no idea what possible costs we would be talking about either, I live in London) Again I don't know how long it will take after the initial visit to actually be diagnosed with something.



Anyone who has possibly been in a similar position please do let me know. .I feel very tired these days, again I'm not sure if this is a symptom or whether it is to do with the situation itself and would just like to know what I have so I can possibly 'prepare' myself for the future..
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  • uknick
    uknick Posts: 1,635 Forumite
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    I was diagnosed with possible RA last year. I'm in my late 50s, a little overweight and a regular gym user.

    RA mainly affects my knees where I developed a Baker's cyst in my right knee last September. For a couple of days I had problems walking as the knee became very stiff, inflamed and painful.

    Luckily I have private medical insurance and was able to quickly a) get my cyst dealt with and b) diagnosed after a myriad of blood tests. The tests all came back negative, but based upon my physical symptoms; pains in joints, dry skin on the elbows and the Baker's Cyst in the knee, the consultant gave a diagnosis of seronegative inflammatory arthritis.

    At the moment I'm on an anti-inflammatory diet and physiotherapy exercises for the knee muscles and it seems to be working, in that I don't have day to day pain in my knees. But, running and other leg centric cardio exercises (wave machine/cross trainers) are out of the question as the right knee just gives up the ghost and I don't want another cyst.

    I intend to stay on the current diet for 3 months, which will be until the end of this month. I'm then going to try supplements of Omega 3 and Turmeric to see if they work better than the food diet. After that I'm probably going to come off all anti inflammatory stuff for three months to see if they actually made a difference. After all that I hope to have a pretty good idea as to what suits me best. I'm doing all this just to make sure the anti inflammatory stuff is not just having a placebo affect.

    If it turns out that none of the previous diet actually helped (but I think it does), as last resort I'll have to go to my GP to see what medication is available.

    Finally, with regard to treatment for the cyst, the consultant told me to go to A&E if it gets bad again, as very few GPs will be willing or able to drain it.
  • Ms_Mop_123
    Ms_Mop_123 Posts: 83 Forumite
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    edited 5 February 2020 at 6:36PM
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    Hi....I was diagnosed with Rheumatoid Arthritis (RA) in 2008. My symptoms at the time were pains in various joints, shoulders, knees, fingers. I kept giving myself reasons why various joints hurt until one morning when I could hardly open my mouth, that was when I decided I had to see my GP. Without boring you with the details, years previously when I had agonising pain in one of my shoulders radiating down my arm it was suggested to me by an out of hours GP that I could have RA, I never followed it up at the time.

    My GP when I saw him was absolutely rubbish, I told him my symptoms and asked if it could be RA, he looked at my hands (no swelling) and just said I hadn't got it. I had blood test done but he refused to do one for RA, this went on for a few months, I was just getting worse. I had private medical insurance at the time and I asked to be referred to a specialist. Saw a rheumatologist who told me I had RA, a simple blood test, along with my symptoms, I'm seropositive, I've got the factor in my blood. I now see him through the NHS. I'm currently in drug induced remission, have been since early 2013, I take two medications, one I inject once a week and the other is in tablet form I take once a week, I don't need pain relief at all. There is life with RA!

    Your symptoms do sound like some sort of inflammatory arthritis. The word "arthritis" is an umbrella term, there is around 200 different forms of arthritis. The main problem with having RA is that most people think it's OA and don't really realise what a serious disease it can be. People tend to think it's age related and it's not, children are diagnosed with it.

    Some people with RA do say that they are very fatigued with it, thankfully I'm okay there, some people lose weight with it, that's the only symptom I would of liked, but Sod's law I didn't get that. Everyone is different with how it affects them, there's no one pill suits all either, the medication has to be fine tuned for the individual, this can take time, but once it's sorted, most people do okay. Don't know if you've looked at any support groups and read people post, if you have and your getting worried what you've read, just take a step back and realise that that's a small minority that post on these platforms, people mainly post when they're having problems.

    I know it seems along time till your appointment, but from what I've read you haven't got to wait too long, some people have to wait for months. When you do see your consultant write down anything and everything that's been happening, remember, no question is a silly question. RA can affects you in loads of various ways, the first thing on my list was about my eyes, they had been hurting me, I had had my eyes checked st the opticians because I thought something was wrong with them, I thought it was a stupid thing to mention, but you know what? RA can affect your eyes.

    In the meantime it might be an idea to look at The National Rheumatoid Arthritis Society's on the internet, lots of useful info there, they've also got a helpline you can phone 0800 298 7650.

    Hope I've helped in some way, anything else, just ask.
  • pollyanna_26
    pollyanna_26 Posts: 4,839 Forumite
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    edited 5 February 2020 at 7:27PM
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    My dd and I were diagnosed at different times with Osteo Arthritis , Psoriatic Arthritis and Fibromyalgia. Psoriatic is Rheumatoid but all are difficult to live with in their own way.


    It depends very much how good the consultant is when it comes to diagnosis. Over the last few years Rheumatologists have been under a lot of pressure and appointments can be delayed.


    There's a thread on the Old Style Forum Old Style Ways and Poor Health. I've recently started it up again but have linked it to the original thread which has a lot of posters talking about what worked for them and what didn't . To my mind a good GP is valuable as they will push things along when needed.
    polly


    ETA Versus Arthritis is a helpful site. It's the original Arthritis UK . We got a lot of advice and very helpful booklets from Arthritis UK.
    It is better to light a single candle than to curse the darkness.

    There but for fortune go you and I.
  • mimiduck
    mimiduck Posts: 194 Forumite
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    Thank you for the replies, i'll definitely check out the sites mentioned.


    And thanks for pointing out there is life after arthritis! Sometimes it seems a bit of a gloomy prognosis, especially at the age of 30...



    I'm taking some supplements as well such as glucosamine, fish oil and collagen (as originally they said OA) but I might try other things as well to see if there is difference. I've never heard of a specific anti-inflammatory diet I might try that as well, I eat quite healthy as is but I could eat more fish and berries.



    I guess the main thing was because almost all sites mentioned swelling being a symptom I thought it's weird in my situation.. Anyway I will need to wait to see to the appointment and I will try to jot down as many things before I forget.
  • pollyanna_26
    pollyanna_26 Posts: 4,839 Forumite
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    My daughter was diagnosed with pSa in her twenties. With brilliant meds , physio and pain counselling among other things she's gone from a wheelchair to crutches and now at 35 only needing her very pretty stick every now and then during a flare.


    Treatment has come a long way since I was diagnosed the difference between us both is obvious.


    Take care and stay positive.
    polly
    It is better to light a single candle than to curse the darkness.

    There but for fortune go you and I.
  • Mrsn
    Mrsn Posts: 1,430 Forumite
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    OP I don’t have arthritis but I do have 2 auto immune conditions.

    I was diagnosed with the first at 23 and then the other at 31. Fatigue and general weariness in part and parcel of these conditions unfortunately these Will flair from time to time. It does get frustrating and I totally understand the feeling gloomy and down with it all. Life long conditions can affect you mentally from time to time so just be aware of that, I’m being referred for some input to help deal with that side of things which I’m hoping will be beneficial.

    The very best of luck to you, March might feel very far away right now but it’ll be here soon enough.
  • Spoonie_Turtle
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    I don't know if this is going to help but from late November to seeing a specialist and hopefully having a diagnosis confirmed will be four months. That is incredibly good for a non-life-threatening illness on the NHS! For myself and most of my chronically ill friends it's taken us years (I mean, between 4-10 years) to get a diagnosis, and even longer to get specialist help. So you've caught it early, which hopefully means treatment can stop it from getting too much worse for quite a while :) That's the good news. The bad news is that you may have to advocate for yourself and push for help in the future if it's not offered. If things get worse and they try to brush you off, insist they investigate or refer you to someone appropriate - or go back and see a different GP. Finding a GP you trust and who seems to be helpful is key to being able to effectively manage long-term conditions. That, plus educating yourself and learning tips for minimising symptoms and maximising life. It is possible, and I wish you all the best with it :)
  • mimiduck
    mimiduck Posts: 194 Forumite
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    Thank you all, it's nice to hear different stories. Yes I have to say it does depend on the GP and I just kept going back until they probably got fed up with me!
  • pollyanna_26
    pollyanna_26 Posts: 4,839 Forumite
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    We are lucky to have a wonderful GP but with some consultants and other health professionals have encountered delays and difficulties. The motto now is " The squeaky wheel gets the oil" Polite but firm persistance works.
    polly
    It is better to light a single candle than to curse the darkness.

    There but for fortune go you and I.
  • [Deleted User]
    [Deleted User] Posts: 7,323 Forumite
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    edited 25 February 2020 at 2:23AM
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    I had the same experience with my GP, I don't know how many times I went to them asking for a referral to an arthritis specialist.  I clearly had swollen joints and nodules but it was always 'could be something <anything> else.  Eventually they did a blood test and I was found positive for rh factor inspite of xrays showing little joint deformity in my knees and hips (but pain getting steadily worse).  Once I saw a specialist he had no hesitation in saying I had rh arthritis.  

    I have found I get tired quite easily, not sure if its the discomfort or what. Not due to a lack of Iron etc.

    BUT I find clinic appts a bit overwhelming (I have autism).  No one seems to be able to help with that.  So I don't go anymore so I don't take any anti rh arthritis medication.  The ones they prescribed third appt affect your immune system so they needed me to go for regular blood tests which i was scared I'd forget.  Just the way i am, I get stressed and forget everything else.  No help for that.  But I am very much in the minority in this.  Most people could do monthly blood tests very easily. No I have no one to help.  Just the way things are, unfortunately.

    So I just have had to find ways of dealing with the pain.  I have been prescribed 30mg codeine/500mg paracetamol tablets.  They do help but I know the pain will get worse and don't want to get tolerant until there is no choice.  One thing I have found really helps with the discomfort is Hemp Active Gel, even on my hands and feet which have quite bad nodules (also have it in hips, knees and shoulders, basically anywhere that has a joint.  The gel seems to reduce/eliminate the pain for quite a long while so I can do whatever I need to do so I am more active now than I was a year ago.  I was very sceptical about the gel as I felt it was likely to be like the anti aging skin creams that promise everything but do very little lol, but have been pleasantly surprised.  I'm still only a third way through my first tub, bought it about 3 months ago (I am a bit reluctant to use anything lol).  Hot water bottles, heat pads and a foot massager also help.  I am hoping to try Yoga soon if I can cope with that.
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