hello from a palindromic sufferer

lelesmummy
lelesmummy Member Posts: 14
edited 2. Sep 2013, 15:52 in Say Hello Archive
my name is rachel and i have palindromic rheumatism. my father brother and sister also have this and i suspect my son who is 9 also has it. when we were children we suffered what the dr would call growing pains and my mums life was a nightmare. dr's constantly accused her of being an over worrying mum, and even told her that we were making up the pains to get more attention and that my mum wasnt loving us enough. finally when my sister was 13 she saw an american dr (we lived on an american army base in germany) who figured out what was going on. due to blood results not showing a flare up like most other types of arthritis, the dr's had beeen reluctant to believe my poor mum, but this american dr was brilliant he saw my brother too. sadly i was at boarding school and never saw this dr.
my PR didnt really bother me as much as my siblings until i was in my mid 20's. i visited the GP and explained i had never had a diagnosis but that my family all suffered. i was told that this condition didnt exsist it was all in my head and i just needed to stop being lazy and lose weight. this nearly killed me. i became depressed and didnt go out for nearly a year. then my husband dragged me back to the GP. i saw another dr who ordered some blood tests and gave me naproxen for the time being. unfortunately the tests came back clear (as i had expected) and the gp said he couldnt refer me to anyone because the results were clear. he gave me some dyhydracodiene along with more naproxen and sent me on my way. since then i have been busy having a family and now have 4 boys. the youngest is 5 weeks old. i have managed nearly all my life (im now 31) without a proper diagnosis but its never bothered me much.
until now that is. i am in pain daily with different joints or muscles and i get dark red/purple blister like things where a flare up is coming. they are hot to touch and the only thing that helps is ice packs.the pain killers work to a certain extent but im spaced out most of the time on the codiene and with a new baby i just cant cope like that.
i have been back once more recently to the gp with my 9 year old in tow, and was told sadly that he was suffering growing pains and i needed to give him extra cuddles. its very sad that history is repeating itself.
anyway thats me. a sufferer but a busy mum who refuses to let this get to me.

Comments

  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Oh dear, that's terrible what you and your family have been through.

    Have you shown the blisters to your GP? Where do you get them? I have a sero-neg type of arthritis which was just diagnosed as psoriatic. I started with the arthritis seven years ago and am just developing the psoriasis (pustular) now.

    I hope you get the medical help you deserve. In the meantime, I'm glad you've found the forum. There are lots of terrific, helpful people here :)

    ((()))Anna
  • stickywicket
    stickywicket Member Posts: 26,623
    edited 30. Nov -1, 00:00
    Hello Rachel. It's good to meet you but that's a very sad story. How upsetting for all your family! I haven't heard the term 'growing pains' used for years. I thought it had long been accepted that what used to be called that was actually usually some form of arthritis.

    I've been reading Arthritis Care's leaflet on Palindromic Rheumatism (Just enter it into the search engine at the top of the page and it's the top entry on the left in pdf form). It seems it can be quite difficult to diagnose but fortunately it causes no permanent joint damage. However 1/2-1/3 sufferers go on to develop RA so it does need a proper diagnosis and monitoring.

    I think you need to go back to the docs (If your usual GP is unsympathetic, use a different one in the practice). Take pictures of your 'blisters' to show him. At the very least you need anti-inflammatories such as naproxen but, as you point out, it's essential that you're not spaced out on pain relief when you have a young baby to look after.

    I think you'd probably find it useful to give our Helpline people a ring. I'm sure they could give you better advice than we can.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am so very tired and can't answer properly. :oops: I will be back tomorrow and promise to do better. Take care and stick with us because we wil do our bests to help. I wish you well. DD
  • lelesmummy
    lelesmummy Member Posts: 14
    edited 30. Nov -1, 00:00
    hi all and thank you for your replies. i am very interested in the psorisis as i suffer this really badly on my scalp. it comes and goes in a sort of pattern and now thinking about it it is quite bad now as are my flare ups. i generally find another reason to blame the psorisis on like the hot weather, or ive dyed my hair etc, but im now wondering if the 2 are coneccted? sometimes the itching gets so bad i rake my hair in the night and wake to find a lot of hair on the pillow and i make my head bleed.
    im going to try and go back to the gp sometime next week as my husband is on holiday so he can watch the children and it will give me time to talk to the gp in more detail if she is willing to listen. unfortunately there is only 1 dr at my surgery unless a locum is in so the chances are it will be the same gp who dismissed me before.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Psoriasis is an auto-immune condition, as are things like eczema, asthma and most forms of arthritis. I was born with eczema, I developed severe asthma aged seven and then, in 1997 when I was 37, my psoriatic arthritis kicked off in my left knee, I also had psoriasis on my scalp but that cleared up. It wasn't until late that 2006 I had my first bout of psoriasis on my hands and soles. Seventeen years on I have many more affected joints and osteo arthritis to boot. :lol:

    Auto-immune conditions run in families because they can be inherited. My parents both dodged the genetic bullets they gave to me, the eczema and asthma came from my Mum's family and the psoriasis from my dad's. You obviously have your hands full so I hope you can get some proper help soon - I think you should ask, at the very least, for a referral to a rheumatologist. DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    My symptoms followed a palindromic pattern near the beginning but then changed to constant.

    Please be sceptical if the same GP is dismissive of your psoriasis. My old GP is still dismissive of mine and connection with arthritis, even though I have a proper rheumatologist-diagnosis of PsA, biopsy-confirmed psoriasis and agreement in diagnosis from other GP's. He still believes I have something other than this. If I had continued following his advice, I still would not be receiving proper treatment and inadequate pain relief. I believed in him wholeheartedly and it was very difficult to accept that he might not have my case quite right :)

    DD is right, at the very least, you should have referral to a rheumatologist for their opinion.

    Best wishes and luck to you,
    Anna
  • lelesmummy
    lelesmummy Member Posts: 14
    edited 30. Nov -1, 00:00
    thank you again all. i had to go back to the gp today. im not sure why but all of a sudden my PR is so so much worse. ive had about a week now where i am unable to do anything and the hot red sores have returned with avengence. gp was as unhelpful as ever and her main concern was my weight. now i will admit i am classed as obese and i am very awre of the strain this is putting on my joints but ive lost 2st 8lbs so far and yet this went un noticed. she is unwilling to do anything until i get to within a stone of my ideal weight. i cant understand her theory though. surely being overweight doesnt put strain on my fingers, toes, elbows and shoulders? these are my flares ups this time. she refered to my last lot of blood tests and said they were all clear so she doubts its any form of arthritis. the red sores she said is an allergic reaction to something as is the psoriosis on my scalp and she gave me some antihistamines. she even suggested i might have headlice as i have young kids. (i definately dont as i just treated the whole family as i thought this might be the reason for my itching!)
    i am totally devestated and cannot figure out where to go next. there is only one dr at my surgery unless im lucky to get a locum who is in, and i cannot move to another surgery as i do not drive.
    i do see a physio for a pelvic injury and pelvic girdle pain related to my pregnancy and im wondering now if she could refer me. i will talk to her about it next time i see her i think.
  • stickywicket
    stickywicket Member Posts: 26,623
    edited 30. Nov -1, 00:00
    I see that you've had some very good advice from Megrose on the Helplines forum, lelesmummy, and I really can't add to that. I hope taking the leaflet to your doc will help. Please let us know the outcome.
  • frogmorton
    frogmorton Member Posts: 27,389
    edited 30. Nov -1, 00:00
    HI lelesmummy

    Just a quick and very late hello from me.

    I too have had the label PR as well as seronegative RA. Luckily I do see a rheumatologist despite my bloods being negative I am on DMARDs.

    My Sister is overweight (luckily for me I am not) and she has struggled to get help herself because of this. I really wanted to say a big WE DONE for your weight loss :D You are doing so well and yes I QUITE agree being overweight has NOTHING to so with pressure on finger joints :roll:

    Love

    Toni xxx
  • lelesmummy
    lelesmummy Member Posts: 14
    edited 30. Nov -1, 00:00
    thought id give a little update. went to my gp for my 8 week postnatel with baby. because she was doing my post natel the subjecy of my weight came up, she asked what i planned to do with regards to losing some weight as i told her i did not want anymore babies and was concentrating on me for a while. i explained i wanted to lose some more and she looked surprised and asked if i had been dieting. i explained that having diabetes in preganancy meant i had a strict diet, and she then decided to weigh me. i have lost almost 3 stone now! i think this put her in a good place. she is obviously a dr who doesnt like overweight people who arent helping themselves. because i had lost a fair bit she was more willing to listen to me. i explained about the family history, the pain ive been suffering, and the fact that it can be hard to detect because it doesnt always show up in your bloods. she was so helpful. she admited she doesnt have any knowledge of PR and that shes actually never heard of it. she has upadted my family history in my notes and has said she will do some reading about PR. she said she couldnt really go into depth with me as she had lots of other mums waiting for their 8 week checks. she told me to come in at my convience, preferabley when im having a flare up, and she will arrange some blood tests, and a referal. in the mean time she has given me some naproxen of a stronger dose, some dihyradcodeine for the really bad days and has got me an appointment with a nurse to discuss some support for the weight loss.
    all in all a much better gp appointment than before.
  • frogmorton
    frogmorton Member Posts: 27,389
    edited 30. Nov -1, 00:00
    Well DONE Lelesmummy :)

    That sounds like a great appointment (and 3 stone :shock: Great weight-loss there :) ) and an even better plan.

    Let's hope that you can see her next flare and things will improve for you from now onwards.

    Please do keep us up to date

    Love

    Toni xxx

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