RA is no fun - your joints just want to party!

I was diagnosed with RA in 2008 but my rheumatologist is adamant that I have had the disease for about 15 years; it just wasn't diagnosed in the UK.

I have had the pain and stiffness in my thumb joints and my knees but I was told that I was too young to have RA - I was in my thirties.

Unfortunately my problems go further than RA as I have had three strokes and have a long standing back problem and the strokes, RA and back problem mean that my hips are very painful.

I noticed big problems with my hands whilst on holiday in June 2008, I saw my GP when I got home and she sent me for blood tests. When the result came back a couple of days later she made an appointment with the rheumatologist. He told me it was RA before the x-rays were done and started me on prednisone immediately and 25 mg of methetrexate. The x-rays confirmed his diagnosis. I also take 5mg of folic acid to counteract the methetrexate. Since the diagnosis I have found the RA has spread and I also have osteo arthritis too; oh joy!

Recently the rheumatologist sent me for a bone density scan on my hips and back. The result is I have Osteopenia,which is where the bone density is lower than normal. It is considered by many doctors to be a precursor to Osteoporosis.

I was told that exercise, weight bearing kind, is the best thing to keep Osteoporosis at bay but my mobility is limited due to the RA, back problem and the legacy of the strokes. I am having physio twice a week to help my hips and back and I have exercises to continue at home.

When I get pain I use cold packs on my hands, wrists, ankles and feet. For my back, hips and knees I use a heat pad. The worst pain from the RA now seems to be with my neck/upper back/vertebrae and jaw. When my neck is very painful it gives me a headache that is like a cap right over my scalp to my forehead, it also gives me incontinence. The jaw pain means that eating and swallowing are difficult and my left ear seems blocked so that I have difficulty in hearing. I have an appointment with an Ear Nose and Throat consultant.

For me the fact that you never know where the pain will raise it's head. It is a magical mystery tour every day and each joint wants to join in and not be left out of the party. Sharing with other people what is happening with the disease, the side effects of medication helps to ease the horrors of this nasty disease.

8 Replies

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  • Wow you have certainly been through the mill. As you say its a magical mystery tour & never monotonous.

    Hope the ENT team can help sort that side of things for you.

    Keep us posted.

    X

  • Gosh, what a terrible time you've had, I was only diagnosed this year and thankfully was caught very early, it's so sad that you have suffered so badly for so long without being diagnosed....

    You are so right, good to share and there is so much support here on this site and as Chatsi says, keep us posted :)

  • Hi there. You certainly have had your fill of things. I was diagnosed in Oct 2010 but like you I think I suffered symptoms prior to that, but wasn't diagnosed until last year when I finally got to see a different cons for the 2nd time in 2 years. I have OA too, isn't life fun!

    Hope to hear more from you. Take care

    Julie xx

  • A lot off your story sounds similar to mine, sorry hands hurting to much to type it all at the mo, I too have osteopeina and for me due to using a wheelchair and severe back and hip pains I struggle like hell with excersie however Ive found hydrotherapy my only option I have to use the lift to get out off the pool etc but I hope its lowering my risk of osteoperosis after all Im only early Thirtys!

    Take care

  • Hi Burgundy Coral. RA usually strikes between the ages of 30 - 50 so I am surprised your GP didn't know this. Children can also get it - my good friend Diane has an 9 year old grand daughter who was diagnosed when she was 6 and is on MTX now. I was diagnosed later than 50 but like you do wonder if I had had it for some time before that as I kept going down with all sorts of odd bugs for at least 2 years. It was my hands and feet which first alerted, not the GP who was pretty useless, but the chiropractor who insisted my GP do a blood test. The GP thought I had a "bleed" so put me through several unncessary tests and finally referred me to an orthopaedic surgeon who took one look and told me I had RA and immediately referred me to my RA consultant who took me straight into hospital for treatment. (I was in a wheelchair by then). Needless to say, I have a different GP now who knows about RA and is very supportive. I also get pain in my jaw hinges which makes eating and drinking very difficult. I do rub Ibroleave Gel into both sides of the skin which does seem to help a bit. Likewise into my finger joints as well but I do find putting hands (and feet) into cold water, or using cold packs is more effective. I also take Nurofen gel capsules during a flare up which helps with the pain and inflammation. Thi s morning, my back, feet and some of my finger joints are painful and swollen. Did however, manage to take the poor dog for a short walk. However, puppy is going to have to wait a bit. I don't know who was helping whom. Hubbie has gone off to play golf so I am having a rest after a bad night. Hope you begin to feel better soon. This is a very good blog site for support = let us know how you get on. Love LavendarLady

  • The RA was diagnosed here in France. It was my French GP who picked up that it could be RA and refered me. In the UK despite presenting symptoms of RA the GP told me I was too young so nothing was done.

  • Hi BurgundyCoral

    nice to meet you,my name is Tricia had RA 3 years in toes, ankles. elbows, hands, knees and bumps a daisy, I now have Humira and methotrexate (MTX) I inject that as I lost my hair and was plagued with headaches, I'm having a bit of a rough time as it has caused my eyes to be very dry and gritty, I see a specialist next week.

    keep in touch with us we have a good support circle.

    xTx

  • Thanks Tricia. I am so happy to have found this place. I hope I am not too negative I try to keep some humour going! RA is a horrid disease and we have so much to cope with having good friends around us who really KNOW what we are going through is important.

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