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New to RA - what do I ask?

Posted , 10 users are following.

Littledog
Littledog

I'm a 39 year old single female and I think I have RA.  I have had joint pain specifically in my knees over the years, mainly when I have been particularly active (I do a lot of walking and karate).  I had swelling behind both my knees about three weeks ago and during an exercise warm up session had a lot of pain in my right knee - next day it was immobile and I could only limp and put no weight on it.  I told my GP about the swelling but anxious about the karate, they sent me for an xray (which showed small amount of wear and tear).  Due to tummy issues I was just taking pain relief.  Within a few days I had the same issue in my left knee and I became practically immobile.  I should add I have had chronic fatique for weeks but didnt know why.  Since my knee's started, this fatigue has only become more and more intense. I went back to my GP who gave me Celebrex and asked me to come back for bloods.  Within hours, the pain was spreading across all my joints and if I got a pain in my left elbow, it would follow in my right and my body is now riddled with discomfort.  I have had itchy dry eyes, constipation  there is that much clicking I sound like a xylophone.  Everything I have read sounds like RA.  I am going back to my GP tomorrow for the bloods and I amgoing to ask to be referred to a rheumatologist, even before the bloods come back asI know it will take weeks and honestly, you don't need me to tell you, this is a nightmare.  I am single with no parents and just a small family, the impact this is having already on work and home is just awful.  I need to think positive but I am struggling, I have zero energy and this is having an emotional impact.  Sorry for venting but I suppose the question is, what else do I need to be asking of my GP tomorrow?  Please help if you can..

2 likes, 34 replies

34 Replies

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  • lrevenden
    lrevenden Littledog

    Posted

    So sorry you're feeling so much pain at the moment. You should definitely ask your GP for a referral, it took me about 3 months to get to see the specialist. I couldn't take Celebrex (or any other of the NSAIDs) so my GP gave me prednisone (steroids), have a word with your GP about those too. You wouldn't want to be on them long term but for short times they can really help.

    I know what you mean about the fatigue, it's been a big problem for me also, sometimes worse than the pain and very frustrating as it feels like trying to think through a head of cotton wool!

    • Littledog
      Littledog lrevenden

      Posted

      Thank you.  Its good to be on here as I didn't think i could ask for steroids ahead of the diagnosis, they don't seem willing to give me anything, just incase it turns out to be viral.  I haven't found anything on the net that suggests this could be viral though.  I agree about the fatigue, I have been feeling a bit 'dim' lately too, not quite on it, cotton wool describes it perfectly.  I don't think  the fatigue helps my mood rolleyes  Hope you feel better soon.
  • Buckeyes
    Buckeyes Littledog

    Posted

    Sorry you're having so many issues!  I started out with just my two knees being painful, not in the joints but just above the knees.  Within a couple of weeks my right hand and forearm were in pain.  I couldn't get off the couch without rolling off because I had no strength in my knees and my hand was too painful to help give me a boost!  I went to my family doctor and asked if there was a blood test that could show why all this was happening and he said "you mean like ra?"  He looked at my hands and said I didn't have nodules and gave me Mobic for arthritis!  I went the route of ortho doctors who told me it was tendinitis and mild carpal tunnel.  After I exhausted them the left side became involved too!  I too had the extreme tiredness and didn't know why.  After two trips to the emergency room, both saying it was tendinitis, I had a nurse practitioner do blood work because I thought I was allergic to the blood pressure medicine I had been put on when all this started.  Tests showed a rh factor of 815, it!'s supposed to be under 14!  

    Pare you located in England?  I wonder because I got my blood work back within the week and an appointment with rheumatologist within 2 weeks!  I am so n USA!

    i hope you get your results soon!  As far as questions, you might ask for a shot of prednisone!  It got rid of my pain Almost overnight! 

    At least, then, you can deal with what is to come!  

    Good luck and keep us posted on what's going on!

    • Littledog
      Littledog Buckeyes

      Posted

      I am in England, sorry, I should have mentioned, and thank you for the reply.  I am having my bloods taken tomorrow and they should be back in 10 days.   I asked should I make another appoinment for ten days and they just told me to ring in and speak to the receptionist for the results... so I am seeing another GP tomorrow and going to push for a referral to a rheumatologist.  I will mention that shot too, thank you. 
    • donna82193
      donna82193 Littledog

      Posted

      Hello

      I too started the same way but mine was in elbows then just went everywhere within months and the fatigue is awful. I had bloods and they

      came back negative. Luckily my doc still referred me to a rheumatologist and i have been diagnosed with aggressive RA. Please dont rely heavily on bloods. I had scans which showed how rapid the damage had been caused already in just six months.

      I hope you are ok and get sorted soon.

      X x x

    • Littledog
      Littledog donna82193

      Posted

      Oh I am sorry to hear.  Hope the damage isnt too bad? Should I be asking for any scans etc so these will be ready by the time I get the Rheumatology appointment (hopefully!).  I guess that might be helpful in determining how aggressive it is in damaging me.
    • donna82193
      donna82193 Littledog

      Posted

      I couldn't get scans before rheumatologist but the damage was so fast it didn't or wouldn't have made a difference. The best thing was doc didn't mess about and I am now on a drug treatment. I am waiting for it to start working but doc has said im in for the long haul and have particularly aggressive strain. It makes it more difficult being sero negative because they can only go on me and scan results. Also there is something called a das score which im 6.1 and being negative thats very high.
    • Littledog
      Littledog donna82193

      Posted

      Gosh there is so much to take in.  Not heard of a das score.  I am sorry to hear you have such an aggressive strain. 
    • donna82193
      donna82193 Littledog

      Posted

      Yes I do. I was a armed and unarmed self defense trainer and black belt kickboxer before all this. It was only when I had xrays for ra they found I had osteoarthritis from my neck all the way to the bottom. Its a different pain though. Osteoarthritis is like an ache and hurts in an uncomfortable way but ra is like when u have just broken a bone, that searing heart stopping pain. Thats my way I can explain. Look up das score on google. It basically tests sore joints and scores it.

      Try not to worry too much intil u speak with a rheumy and see what they say. X x

    • Littledog
      Littledog donna82193

      Posted

      Thank you, I am getting a bit ahead of myself but I think mainly cos I haven't had much info from GP (and Granma had nasty case of RA).  I love being active and I am a volunteer dog walker and do karate and now struggling to prepare my own food (and type) is really affecting me.  Thanks for the support x
    • donna82193
      donna82193 Littledog

      Posted

      I know what u mean. I am devastated but u know your own body and know when u are ill. Try to rest but still move about etc. I wish u all the best amd let us know how u get on. X
  • cheria
    cheria Littledog

    Posted

    Hi, I'm so sorry you are dealing with this.. just my thoughts here, but sounds like there might be several things going on, and does not sound like RA to me. Your pain in your knees sounds like painful osteoarthritis that you may need a surgical procedure on either inpatient or out..that xrays can show..swelling and inflammation leading to a bakers cyst on the backside of your knees. Chronic fatique can happen from the inflammation going systemic into your body, leading to a serious depletion in magnesium, which then can develop into fibromyalgia, which is the moving around pain you describe in multiple places feeling like horrible muscle/bone pain. Taking magnesium (magnesium glycinate..not magnesium oxide as the mag oxide is not absorbed well and has a laxative effect! ). I was able to treat the chronic fatique and terrible fibromyalga by taking magnesium glycinate together with, calcium (calcium carbonate) in a 1:1 ratio, with vitamin D 3 (2000 mg). These need each other to be able to be used and absorbed in our bodies, and together are responsible for 350+ enzyme reactions involving muscle, bone, nervous system, protein, and mental state. This will not take care of your knee pain, which appears to be osteoarthritis, and a painful condition associated with this, to which an inpatient surgery may take care of (may be loose small particles of bone to be removed, or a bone in bone condition). But from your description of the many things going in, it doesn't sound like RA at this time. I hope I have helped in some way, and hope you stay very proactive with the nutritional information I have given you, as it was a magical discovery for me, and not an angle that my doctors were integrating, which kept my conditions untreated for several years. Please let us know how everything turns out for you, and know you can come here anytime for support in many ways.
    • Littledog
      Littledog cheria

      Posted

      That was helpful thank you.  From the symptoms I read, I appear text book RA but I am mindful I haven't been diagnosed.  I suppose I am searching around and switching GP's because my GP wasn't particularly sympathetic (suggested I ditch karate for a good book, like activity is even an option above eating and personal hygiene).  The x ray didnt show anything significant in my knee, would osteoarthritis show?  Thank you
    • cheria
      cheria Littledog

      Posted

      Hi, possibly you haven't shared all symptoms...there are many conditions that mimic RA or are similar.. from my nursing and personal exp, your description does not sound like the auto immune disease RA.. But the only way to know of course is to be accurately diagnosed. Osteoarthritis shows up on xrays as narrowed space, revealing cartilage has been broken down. I have this in my knees diagnosed as osteoarthritis, and have systemic RA, which effects primarily in the beginning, hands, fingers, wrists, (tendons are often inflammed) as well as feet, ankles and tendons in feet..equally on both sides of the body...RA is a connective tissue disease that not only effects areas such as these, by connective tissue involving heart, lungs, etc.
    • Littledog
      Littledog cheria

      Posted

      The GP just said wear and tear but nothing significant on the x ray.  To be honest, I have that much going on and moving around at a pace, it is difficult to keep up now.  Initially it was fatigue and swellings behind both knee's, that really ached, including the hamstrings down the back of my legs.  Then after exercising the right leg just went, couldn't put any weight on it and coul not straighten.  Few days later, same to the left with no trauma.  Then the rest started, worse fatique, aching and stiffness in other joints, very hot knees, lots of clicking and odd searing pain when weight is on joint, bit of a temperature too.  Its all moving around - bizarre, and pretty debilitating!  I have started to notice shallow breathing too, like I need to breathe deep (but I am in a peak and trough emotional state)
    • Buckeyes
      Buckeyes Littledog

      Posted

      Breathing problems might be panic Attacks.  You sound like mentally you are dealing with a lot!  I've had those for an unrelated problem. Try breathing into a paper bag when you can't get your breath and see if that helps.  Be conscious of your breathing and try slow deep breaths, taking the same amount of time breathing in as out.  I could be wrong on that.  Look it up just in case.  Good luck!

       

    • Littledog
      Littledog Buckeyes

      Posted

      No I think you're right and thanks for the advice.  This has knocked me for six and affecting me more than I thought.
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