Whats wrong with me? not a thing now apparently!

Hello All,

I have been having some trouble with my right wrist and as previously said on here, some tingling pins & needles down little finger and palm, so was a bit concerned, and upcoming operation what with crutches for 3 months....

Had my four monthly visit with RA Specialist today, she says bloods are now normal and all looks good, I asked does that mean no more damage being done? she said well you can't say for sure, but she would'nt think so, so thats good is'nt it?

Well why am I so achy & sore shoulders knees hands? don't know? well neither does she!. Should I take anything stronger than paracetamol for pain, she would'nt advise so???

She renewed my script for Humira, twice daily plaquinil (reduced to once daily on my request), Cymbalta, folic acid & 20 mtx per week. Had a quick look at ankle to be operated on & said, well you will be walking on that ankle bone if you don't get it done (duh!)

She ushered me to the door, which hurt my wrist to open! So is it all in my head, I don't think so, she did advise me to use wrist supports, (duh again!)

Tired, ' - oh are you eating properly', - barely suppressed rage from me.!!!

Anyway, I am off the ciggies 3 weeks now, so best not go on, am very volatile at moment. I can only describe the feeling as agitated rage - could this be making pain worse, or as my better half would say ' thats the nicotine talking'

I felt better for talking to her, and met a girl in the waiting room, who seemed to be in a very bad way, and dying for a chat, she had fybromyalgia/ ME, she said she was going toask for a brain CT, as she was worried about early onset Parkinsons ' good luck with that' I thought, more likely you'll be put on a higher dose of Prozac. Poor girl was sleeping 20 hours a day, her mum having to rub diclac on her legs to get her out of bed. I felt bad for her.

I am slumping to work tomoro, probably have big fight with someone, the way I am feeling! A civil Servant nearly got decked this am. A librarian who said I owed a fee on an old reserved book withered under my steely stare ( hubs expression) no fee. Haha!

Pip pip & cheerio!

Gina.

11 Replies

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  • Oh dear.

    I was in the waiting room at my hospital last week, there was a lady at the side off me looking very upset, so as she was alone I asked her if she was ok?

    The poor lady burst into tears and was so upset, she had just been to see her consultant and she too had been made to feel it was all in her head! She was in a wheelchair, I could see the pain in her eyes, but she too had been asked about what she was eating etc!

    Just as I was about to go into my appointment with the physio one off the nurses came to see her and handed her a complaint form.

    While I had been there she hadnt asked for one, but this nurse seemed to know she wanted one and she even explianed to her how to fill it in ect.

    When I was in one off the Rheumatiod Arthritis paitent meetings the other week we had a consultant do a talk to us on the first week, he explained that because off the ammount off paitents they see and little time they have that they dont really have time to listen to us about our pain, he also said that for them the pain we suffer isnt a priority (harsh I know) but that the only concern he / they have is getting the DAS score down as low as possible so joints arnt swollen etc.

    He said some paitents felt neglected due to there concern being only focused on the DAS score. I agreed with him and said I had felt that way.

    I did however feel better to know that he wasnt just being ignorant and making me feel like it was all in my head its just that the only thing he can really do anything to improve my chances with this evil illness is to get the DAS score down with anti-tnf druds, dmards, anti inflamitorys and steriods.

    Hopefully thats why yours was like that with you also, dosent make you feel better at the time though.

    Take care

    Julie x

  • I only have one word to say FIBROMYALGIA. Thats what i've got as well as ra.As you have joint replacements i would say thats whats wrong. Yes i too thought i was going crazy. I thought they would have to section me as nobody could tell me what was wrong. Fibro goes hand in hand with ra. My advice is to ring your consultant and talk to them and ask if it could be fibro.

    Don't despair your not mad your just in chronic pain.

    Take care

    Sylvia. xx

  • Oh Gina you do make me laugh, your'e absolutely right tho', its all in our heads. WEL DONE - WELL DONE - WELL DONE with the ciggies, I wish I was as strong as you, but I always end up giving in, just one you understand, after someone has told me my bloods are beautiful my DAS is down and I'm very well, when in fact nothing could be further from the truth, its that dreaded "you might not be able to see it but I can feel it", and "yes my diet is fine, and yes I exercise" in fact "YES - I try to do everything I possibly can to help myself including wearing my supports!" Good Luck with your op x

  • Well you sound like me. I can gaurantee ...even if your tests say your fine...something is wrong. I was on the Meth and it just stopped wotking and my test results all say I am fine. The doc gave me another drug and then started to not feel right. Like you said a rage and almost felt like panic attacks and that sick feeling. Well after many visits to the ER and all tests still ok ..I went to the best in Chicago and he gave me a good exam.Took blood and am waiting for the results and to see him in 2 weeks. I am off all the RA medicine and feel better than I did with the crap. Still am not well. The best is when they tell you to see a shrink lol. This is the usual thing they do when they dont know. Its obvious the Methotrextate stopped working and medicine can do that. Plus the RH factor and the ANA means nothing unless your having a flare.Now at least they can have a base line. With so many meds interfering with the test results one would think it means something. Did I see the dif. between my RA doctor and Rush in Chicago as thats one of the top research clincs we have on this. I would get these spells that I could feel coming on..like you said rage...then the weakness and just in bed for 2 days.Thank God for Xanax. Get some as I believe some how this disease works on your nervous system.My skin would get tingly and cold and sweaty. No panic attacks last all day. The xanax stopped the feeling.The Doc and the University told me when I get this way he wants to see it. Well now thats someone who really wants to get to the answer. He siad ..We dont know yet" then he said again "Yet" but we will.Now this is what you want to hear. Get to the best somehow as I have ran into to many RA docs. who should not be practicing. When I know more than them ...this is no good. Then you find Docs.who just fluff everything offf on RA. Well thats bull as everything isnt always RA. Good luck as your not alone. I have the same feeling you have..so your not going crazy. Edie

  • Ah xanax or 'mammys little helpers' as some peeps call em!

  • The tingling in your baby finger can be the ulna nerve. Its like carpel tunnel but this is an ulna nerve entraptment and its at the elbo. am having the release

    next week myself.The wrist is the usual RA.

  • My Rheumy said if its not tingling all the time not to worry!

  • Hi Gina.

    Just because your bloods are ok it certainly doesn't mean your joints are!!

    Just because the RA is well controlled it doesn't mean the joints can't give you any problems! If the damage is already done, which by the sounds of it is, then no amount of medication will alter this. The problems will continue because of the joint being destroyed by the erosion.

    Just think of the problems your having with your feet at the moment and the surgery your about to have. All this joint damage as been done in a short time so there's no reason why the same thing isn't happening to your wrists.

    Strange thing is after I had my feet done my next ops were both of my wrists!

    Sorry if I sound depressing, what I'm trying to say is don't give in, if your suffering tell them. It took me many years to learn this, that I had to pester to get others to listen, it's certainly not in your head and don't let them make you think it is!!!

    Take care Gina

    mand xx

  • Thanks Mand,

    I think you are right. Its right ankle first & left feels as if its following suit!

    I'd say wrists will be next.

    I have a topper today from my employers. see blog about to write!

  • Oh Gina, it's such a familiar story:-( I'm really lucky that my rheumy isn't like this although I once saw a registrar when rheumy was on holiday and she was well, 'brusque' would be putting it politely!

    Mand is right, where there is damage done the pain continues. You can have ESR and CRP < 5 and still be stiff and achey in the mornings and have very sore joints - it depends where it (the RA} had been munching before the drugs started getting the inflammation under control!

    If you are referred speedily by a gp, treated rapidly and appropriately then you have a good chance these days of not sustaining disabling levels of joint destruction - too many people still spend too much time going backwards and forwards to gps without being referred urgently to a rheumatologist.

    Well done on giving up the ciggies! - your RA will benefit and your cardio-vascular health. Have you tried hypnosis? Or a small doll resembling irritating colleagues that you can stick pins in???

    Cece x

  • Voodoo doll sounds like good plan!

    I was referred speedily and treated very quickly, just shows how quickly damage occurrs, its only becoming apparent now with MRIs etc. :(

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