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Just been diagnosed with RA

Posted , 9 users are following.

clare79550
clare79550

hi everyone. So glad I found this forum. Was told I have RA a few weeks ago from GP. Have had symptoms for a few months. Mainly in my fingers and hands. Within a week I had pains everywhere. GP has given me no information whatsoever about RA. Just that I'm been referred to see specialist. I'm currently living in OZ so if my case is urgent I'll get an appointment in 3-4 weeks if not urgent it could be 6-8 months. Is this normal? Iv had to take so much time off work as I can barley get up in morning. I have no idea about the meds everyone has mentioned. Firstly GP gave me Brufen 400mg to take 3 times a day. I found these no good. Returned to GP and he gave me Celebrex 200mg twice a day. Very little relief from these either. I also have started taken Wild Krill Oil 333.33mg capsules. Not sure if these are doing anything. Iv gotten relief from a hot bath and one of them heat packs for my neck one night but I woke up next morning in terrible pain. I don't know if I'm doing right or wrong. This morning for the first time I could barley walk, my feet were affected. I have mostly pains in fingers, wrists, shoulders, neck and knees. I like going to the gym but I'm afraid of doing damage. I have cut out all fizzy drinks fatty foods. Eating more veg fruits yogurts etc. if anyone has any tips or advice I would be so thankful. I'm a 27 year old female and my Rheumatoid Factor was 61. ( have no idea if this is low or high). 

1 like, 25 replies

25 Replies

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  • Light
    Light clare79550

    Posted

    Forgive me, but briefly...

    Ask your GP to fast-track you. First appointments are very important. An early start on the medications can make a difference. Insist!

    If your GP, by some aberration, is not familiar with RA, then tell them how vital it is you get an apppointment within a month (or two. Not later)

    Meanwhile painkillers will help.

    Don't put pressure on the joints. Swimming and cycling are best exercise for now.

    Losing weight is the first thing someone with RA must think about because weight puts extra pressure on the inflamed joints.

    Your dietary adjustments are always going to be good, so stick with them.

    But they won't cure you and probably won't relieve the pain much.

    Krill oil is brilliant, as would be regular fish oil (the best is salmon)

    Your hot baths and heat packs.... whatever relieves the pain is good. Some have spoken highly of epsom salt baths though they didn't do anything for me.

    You'll get lots of excellent input here.

    It's tough on one so young.

    Love yourself and give yourself permission to take life easily.

    Very good luck.

    • clare79550
      clare79550 Light

      Posted

      Thank you so much for replying. My GP is a bit of a joke. He told me on the 16th Jan that he had sent off my file to the hospital to be seen by specialist and to wait 10 days for a letter from them. No letter, so rang hospital today they never received anything for me. Rang GP, receptionist could not check it because the doctor was off until Friday. She'll check then. Was so angry was waiting on that letter. 

      I will try the swimming and maybe the bikes in the gym. 

      I am a healthy weight for my height so that's not an issue. 

      I will be sure to get them salts. 

      I am one of those people that find it hard to sit down and do nothing. Big changes for me. 

      Thank you so much again for your reply. 

      Clare. 

       

  • AnnaDevs
    AnnaDevs clare79550

    Posted

    Hi Clare. I'm new to this forum too although I was diagnosed with RA 3 years ago.  I agree with Light, the sooner you see rheumatology, the better.  Hot Baths and heat pack sounds good to me, that's exactly what I use for comfort.  I'm 36 years old now and am trying for a baby with my husband, so am not able to take medication (I should be on Methatrexate)  They said I could take Sulphazalazine and Hydroxochloriquine but was allergic to Sulph. and Hydrox. did  nothing for me.  I have taken other drugs such as Naproxen, Tramadol etc. but am not able to at the moment. I get my pain in the same places as you.  Fingers, wrists, neck, knees and feet. (although not at the same time!  The pain shifts from area to area.  If my wrists are bad then my feet are usually ok and vice versa.  My knees swell up massively! I have hardly been able to walk because they have been so big and can put pressure on them.  I had the fluid drained and steroid injections into my knees.  One was done in July and the other in September and they have been great since.  Steroid injections are great but they only mask the pain, it doesn't slow down the detarioration of your joints, but if offered a steroid such as a kenalog injection which will be an injection in your bottom, take it!  It gives pain relief for a couple of weeks, although you should be having medication to slow down the process.  I used to be very active.  Gym etc. but I find that I simply do not have the energy to do it anymore, But try to motivate yourseld to keep doing something, obviously there will be days where you just can't.  What job do you have?  Do you have much pressure on your joints through work?
    • clare79550
      clare79550 AnnaDevs

      Posted

      Hi Anna thanks for replying. I will try some private clinics tomorrow and see what's the go. I tried a hot bath tonight got relief while in bath but not much better afterwards. I will keep trying tho. Oh wow do you find it difficult with having no medication? Yeah this morning was first morning I had pain everywhere after a few hours it went in my knees and feet. But constantly my neck and shoulders. Hands come and go. Oh my you poor thing. Iv had little swelling, fingers get swollen but that's about it. I understand what you mean about the steroid injections. I would take any injection anywhere at this stage lol. I do keep telling myself to get up keep moving but yeah sometimes I just can't. I worked at traffic control before Xmas but since Iv had this Iv been doing very light work nice bit of driving collecting paperwork etc. but since I came to oz 4 years ago I would have been lifting a lot of heavy stuff, standing for very long periods and out in all weathers. None of that would have helped my situation I'm guessing. That's great Ye are trying smile will this be your first? 
    • AnnaDevs
      AnnaDevs clare79550

      Posted

      Hi Clare - Sorry for the late reply! No it wouldn't be my first child.  I have an 18 year old daughter from a previous relationship but my husband doesn't have any children.  He would have like to start trying many years ago but because of the age of my daughter and feeling "freedom" again, I wasn't keen to go down that path again at that time as I had just got my career on track.  When I was told that I had RA, it put things into perspective and I thought 'well, it's now or never".  3 years later of on and off trying, no luck.  In hindsight, I wish i'd have agreed back then and maybe things could be different.  I really don't think the steroids and medication and the mental stress of living with this disease has helped the concieving situation.  Hope you are feeling ok today and are not in too much pain xx
    • clare79550
      clare79550 AnnaDevs

      Posted

      Hi Anna

      Aw thats sad, well dont give up keep trying.  If its ment to be it will be.  I agreed medication and stress would not help the body in any way. You were only doing what was best for you at the time.  Best of luck with it all.

      x

  • Jan999
    Jan999 clare79550

    Posted

    Hi clare. Sorry to hear you are having such a rotten time. I can't add much more to what others have said. However your RF is high. Normal is up to 19 or 20 I think. Take care and keep in touch.
    • clare79550
      clare79550 Jan999

      Posted

      hi matron. Thanks for replying. Ok thank you. Was unsure as one doctor told me it was severe. And another doctor told me it was low-medium. I have gotten more information off you guys in the few hours then I have had in recent weeks from GP's. Thank you. 
    • Jan999
      Jan999 clare79550

      Posted

      Hello again claire. My RF was 26 so that's the lower end and I'm constantly in pain. I have my first appointment with the Rheumatologist in 2 weeks, 3 years after I first had symptoms. Some people with RA do not have a raised RF but are diagnosed on their symptoms and raised Serum Protein levels. You are absolutely right about this forum and getting information. I don't know what I would have done without it. Everyone is so supportive and you get good, straightforward advice. Take care.
    • Light
      Light clare79550

      Posted

      Yes, Claire, that's why we're here.

      I've got enormous support from health forums.

      I forgot to mention fatigue.... a real bummer. I used to collapse about two hours after getting up, every single day.

      That's why i said take gret care of yourself. Especially if you're a workaholic, like me, it's hard at first.

      Try exploring the world of art – drawing, painting, music, poetry. A whole new world might open up!

    • Jan999
      Jan999 Light

      Posted

      I'm pleased you mentioned fatigue because I always forget about that for some reason. I am often feeling exhausted and find myself counting the hours or minutes until it's time to go to bed.
    • clare79550
      clare79550 Light

      Posted

      Its great to be able to talk about it with people who understand what your talking about. 

      Oh i know i get so tired so quickly.  Im lucky with work that i can finish early if i want to, so i do get a nap in.  

      I dont read much but i have bought a book!!!! So im going to give that a go and hopefully that'll keep me occupied.  Very true i could find myself a new world, maybe a better onebiggrin

  • lyy13133
    lyy13133 clare79550

    Posted

    Find a well respected place to Try Chinese medication. They will take a much gentler and more effective approach. I live in the UK in london. I travel to Camden for acupuncture and medicine (the medicine is roots and bits of tree etc) and my ESR has fallen from 86 to less than half that after 6 weeks while my CPR has dropped by 2 thirds. You will be told to take medication that is very toxic. Try other options and don't be scared. It is horrible at this stage. But it can move forward. I am totally pain free, have no stiffness and just feel great. But you must take the route you believe is best for you. Good luck
    • Jan999
      Jan999 lyy13133

      Posted

      Hello Iyy I was very interested in your post. I live in the UK. Is there a register of professionals who are qualified in this sort of medicine. I have RA and would find this very useful as I am concerned about the medication the Rheumatologist may suggest when I have my appointment next month.
    • clare79550
      clare79550 lyy13133

      Posted

      I will def reseach chinese medication at the weekend and see what is available over here.  I have heard of people doing the acupuncture, I would def give it a shot.  Ok so you orally take this medicine or is it for rubs on sore joints? Sorry if i sound stupid.  Yeah i have read a lot of the side effects of the medication and it does not sound good at all.  Would much prefer to do things the natural way.  Was never a big fan of people been pumped with medication.  I will give everything a gosmile
    • Light
      Light clare79550

      Posted

      Did my earlier mail re acupuncture go astray....?

      One more time then:

      I hate to burst your balloon about acupuncture. It has many virtues and can heal many things.

      But it is expensive, so worth a listen...

      When I first got RA, I tried 10 sessions. It didn't touch the illness.

      Later a good friend in the US who's been an acupuncturist for 40 years told me that unfortunately it's true. Acupuncture has not been known to touch RA – possibly no other auto-immune diseases either.

      So if people tell you they have been cured by it, I'm guessing they are mistaken and had a spontaneous remission instead, which they attributed to acu.

      Sadly the same applies to homeopathy.

      One of the best homeos in the region – a man who has helped many of my friends – admitted to me he was not able to heal his own mother of RA. He no longer takes patients with that as their primary complaint.

      To my great distress, I personally spent my frist six months searching and researching alternative forms of healing of every kind.

      Nothing touched it.

      Save yourself the cash and buy yourself a hot tub instead.!

    • lyy13133
      lyy13133 Light

      Posted

      Well, in the UK we have acupuncture as an evidence based approach to pain. I am sure it doesn't work for all - it didn't work for my dad's RA - but it works for me and the consultant is fantastic. I often attend with some inflammation on my hands and this disappears after the treatment for at least 5 days. However, I use it alongside with the meds which are individual bags of roots and tree bark and all sort so f things that are cooked (very smelly) and the juice taken off and drunk daily. Ok, I cannot offer a scientific basis for the changes but I have RA, I know how 'off' I felt and how horrible inside and I don't feel like that anymore. It isn't a competition, I am adding this because people aren't offered options and for some people options do work. I tried it and it works for me and my ESR was 86 and my CRP was 70. These have both dropped to half the original number. It isn't all the medicine but I don't want to go on MTX and believe that the combination of diet, vitamin B, iron, omega, chinese meds (that have a root that works like methotrexate and their philosophy is to strengthen the body ) and acupuncture and/or massage is a good combination. 
    • clare79550
      clare79550 Light

      Posted

      some very wise words. thanks for the information x
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