Struggling with PsA & Reactive Arthropathy

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lintilla2002
lintilla2002 Member Posts: 3
edited 20. Sep 2013, 12:14 in Say Hello Archive
Hi

I have managed with Arthritis for many years but was only given the PsA diagnosis in the last 8-10 years. Most of the anti inflammatories dont work for me, infact I havent found one that does. So I cope with coated CoCodamol. Earlier this year I suffered a bout of viral meningitis & about 6 weeks later was diagnosed with Reactive Arthritis. It is proving diifficult for me to cope with so much more pain, especially as the inflamation makes my skin ultra sensitive. Has anyone else found the "normal" anti inflammatories unhelpful? Does any one have any suggestion?

In addition to this I find that people, including my husband, often forget or dismiss my pain as there is no visible reminder or proof. How can I overcome this? Getting me downa lot.

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  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hello;

    Do you see a rheumatologist for PsA? I haven't heard of anyone diagnosed with PsA then Reactive Arthritis, doesn't mean it's not possible. In general, I think the protocol is that if anti-inflammatories do not work, then rheumatological evaluation is necessary by a specialist. They will then prescribe DMARD's like methotrexate, hydroxychloroquine if needed which are much more powerful anti-inflammatories (among other effects).

    Have you been evaluated by a rheumatologist? If not, you may have to push your GP for this.

    With spouses it is necessary to keep telling them over and over again how you are feeling, what your limitations are, the disease is invisible and unpredictable, you must not be stressed, etc., especially if there are no visual cues they can pick up on. Also, tell them why you are saying it yet again, so they don't think you are just whining. Frustrating, I know. After seven years I still have to tell my husband.......In general, I think your efforts may be sabotaged by your spouse wishing you could be your old self. True in my house anyway.

    I am sorry I don't know the answer to getting others to understand besides letting them read Gorilla in my House, and Spoon Theory (can enter these in search engine if you're not familiar with them). They can help other people understand what you are going through. It's a very difficult and common problem. I can definitely say you are not alone, for what it's worth.

    Best wishes,
    xxAnna
  • lintilla2002
    lintilla2002 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Thank you Anna,

    I have seen two rheumatologists neither of whom were prepared to keep seeing me after diagnosis. They both suggested that there was 'nothing more we can do'. That was fine when I just had the PsA to cope with. Now though, the additional pain is proving too much. I am going back to my GP and I will ask them to explore alternatives.

    You are right about my husband, he wants me 'back to normal'. Unfortunately the pain is making me less tolerant than usual. Thanks for the books, I hadn't heard of either so will definitely look them up.

    Claire x
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Hello and welcome from me too, Claire.

    I'm astonished that two rheumatologists have washed their hands of your PsA when they are the only people who can prescribe the correct medication for it. Cocodamol is just a pain relieving medication and anti-inflammatories do only what their name says. For PsA you need a DMARD (a Disease Modifying Anti-Rheumatic Medication). You need to ask your G P for another referral.

    As for your husband - men like to fix things and we are not easily fixed. The things Boomer mentioned are articles not books. Try googling them. They are useful.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I too have PsA (which has led to OA and now fibromyalgia) and I am on a triple therapy for the former which does nowt for the two latter. I am blessed with a patient and usually understanding husband, who does surprise me from time to time by saying things like 'You are still in pain?' Yup, but I choose not to bang on about it. :) He gets the occasional blast of gout in his big toes and soldiers on but that clears and disappears, I reckon he thinks I'm in a similar boat. I wish! :lol:

    I have the PsA without much of the P, does that apply to you? How was your PsA diagnosed and by whom? My GP deals with the OA, my rheumatologist with the PsA and now the fibro (well, I say deals, she has referred me to the Pain Clinic for help which is as good as it gets). I hope to see your name here and there around the forum, the Living with Arthritis board is where we deal with all things medical, so please have a read on there and see if you can find any useful threads - feel free to jump in and join any conversation, new voices and experiences are always welcome. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    It's nice to meet you Claire.

    Yes, if the usual anti-inflammatories are not effective for you, it may be time for a new assessment by another rheumatologist. A serious talk with your GP is good idea regarding the level of pain you are in and inadequate relief from co-codamol. Hopefully, you will be referred to a rheum that is less dismissive of your symptoms. If you are a quiet sort of person, you may need to consider that you are understating your symptoms, and think instead of describing your worst day to your docs.

    Being in considerable pain day in and day out is exhausting and can lead to one having a very short fuse, as you say. I don't like to complain to my husband all the time, he has enough to worry about, but I do tell him regularly that he needs to know how I'm feeling, that it is not merely "a moody female moment" and that I am battling a lot of pain daily. He needs to know this and that I'm telling him so he can understand me, not for attention or to just to complain. If we don't say, family members may not automatically be able to understand our limitations.

    Good luck, I do hope you get some help for your disease and pain, in addition to cocodamol.

    xxAnna
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