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looking for a diagnosis

Posted , 7 users are following.

jane56403
jane56403

Hi all I have spent the last 5 years in chronic pain in my feet, knees and legs, my hips have also just started to hurt, The pain gets so bad I want to vomit. Other symtoms I have are extreme tiredness, skin rashes especially when I go out in the sun with bad itching at night , I have scars from this all over my body.

I first went to a dr 5 years ago and was sent to to rhemotologist who did xrays and said I had mild arthritis in my feet and low vitamin d level it was 12, he wanted me to take amytrytolene and basically said go away.

I struggled through the next few years taking prescription painkillers and just trying to cope but after crying at work in pain I went back to the drs, she ordered blood testsand results were no inflammation, low vitamin d again and low folic acid, she just prescribed vitamin d and folic acid and said go away.

Last week I rang for my repeat prescription for the painkillers to be told the dr has said no. Now I don't take 8 a day well not every day but if I need to as I cant walk I will but I usually have 100 tablets every 3 weeks, so I called the dr, she got on the phone and basically said drs are under pressure to not prescribe painkillers and because of that I cant have any, I asked what was I supposed to do about my pain and she said the pain in my feet etc is withdrawal pain, well yes I said no painkillers pain will come back.

I then asked her why wont they help my pain, find out what is wrong with me then I may not need to have painkillers, and she said nothing apart from saying that there was no inflammation when I had my blood test so that is all they can do.

Now interestingly my mum has the same thing pain in all her joints, hers started 15 years ago and they have said the same to her no inflammation in the blood test so tough go away, her father ended up in a wheelchair when she was little but because she was estranged from him and he has since died she does not know why that was.

My question to you good people is I am at my wits end, the drs wont help basically because they say I show no inflammation in the blood, I am in agony and the rhemotologist has not done a thing, where do I go from here? because at the moment I am in despair.

The dr said she would prescribe me painkillers but only 100 a month so that's 3 a day she also said "be mindful I will not prescribe any more in a month"

So I am now in pain most of the day with no hope and at a loss as to what to do and I would really appreciate some help or advice or stories of what people have gone through trying to get a diagnosis.

1 like, 33 replies

33 Replies

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  • margaret22116
    margaret22116 jane56403

    Posted

    Hi. Change doctors and get a new referral. Your symptoms just make me think of Lupus and it does not always show up in blood tests.

    Are you based in the uk? Have you ever had a blood test whicj vhecks ana?

    • jane56403
      jane56403 margaret22116

      Posted

      Hi yes i am in the UK, i have looked at lupus as well but that was dismissed with no tests at all, so i am torn between lupus and RA or both?

      My Dr seems to think that if no inflammation shows in a blood test then i don't have anything, ridiculous i know as i have read that these things do not always show up.

      In fact i read on this forum i think that someone had gone for their blood test whilst in agony, no inflammation showed in their blood, several months later when they were having little or no pain the inflammation showed up in their blood.

      I am going back to the Dr and will talk to them about this as just because there is no inflammation marker doesn't mean something is not happening. xx

       

    • margaret22116
      margaret22116 jane56403

      Posted

      Absolutely right Jane. I have Behcet's very similar to Lupus. My bloods are often clear. Last appointment nothing to see. But my specialist said he eould not be driven by blood tests but even some of them insist on inflammatory markers being raised! It is absolutely infuriating. I travel to Cambridge for treatment because there is a very goid vasculitis unit there.

      If I were you I would phone Vasculitis UK who have a good helpline service and supply information packs for gp's.

      You really can insist on a specialist opinion with joint pain like that. Worst case scenario, pay for one private appointment with a good specialist and get follow up on NHS. Good luck.

  • Nu2this
    Nu2this jane56403

    Posted

    Hi Jane,

    I agree with Margaret, I would definitely get a second and third opinion if necessary. I have done extensive bloodwork each different depending on the Rheumotologist. My last rheumy asked me to get a second opinion on his own diagnosis just to be certain. I thought that was awesome. I would definitely request an ANA. Also maybe you should see a neurologist they may have some thoughts as to whats going on. Best of luck to you.

    • jane56403
      jane56403 Nu2this

      Posted

      Thanks i will look into this.

      I have seen a neurologist a few months ago as i had a collapse at home and had to be taken to hospital, i told her about my symptoms but she dismissed them saying my pain was due to low vitamin D, she tried to say i had an epileptic fit, an MRI has showed nothing of the sorts.

      Her advice just take a vitamin D tablet every day.........yes i already do that to try and manage unless my blood shows a low vitamin D and then the Dr will prescribe high doses for a few months.

      Other advice i have been given - stay out of the sun.......i have to as my skin erupts in severe hives, one dr said i have solar urticaria and i have to take steroids when it gets bad, the steroids help.

      This particular Dr i think has made her mind up and apart from being very unprofessional she is also being uncaring.

      The last thing in the world i want is to have something i cant ever get better from but at the moment all i want is a diagnosis so i know i am not going crazy, well not too crazy ;-)

      We know our bodies well and as such we should be listened too. x

       

  • cherylnanny
    cherylnanny jane56403

    Posted

    Hi Jane. I was exactly the same as you for my first 3 years before RA diagnosis. The RA didn't' present itself in blood tests, but I demanded more regular tests as the pain got worse. Also, I suffered itching with excessive pain medication at the time. Keep insisting that you need a referral to a specialist in every area as there is obviously a family history there too. Your life will be transformed when you get on the right active medication. I'm struggling a little at the moment, but have been pain free for years. My Rheumatology nurses are angels. Keep fighting and good luck. xx

    • jane56403
      jane56403 cherylnanny

      Posted

      Thank you for your reply, I am going to call the drs today as since I have gone down to 3 painkillers a day I have barley been able to walk, I have been a mess at work because when all you feel is pain that obviously takes over.

       I have also noticed that my hip and other joints that were not clicking before have began to click, almost like they are dislocating, this isn't terribly painful but uncomfortable, and other joints such as my thumbs etc that didn't really hurt before are now showing pain, maybe they did before but the painkillers controlled them.

      The bottom line is my feet and legs in particular, the pain gets so bad its like my legs and feet are on fire, being off my feet makes no difference so sleeping well has not been something I have done well for the last 5 years.

      My mum has been treated the same as me, they do 1 blood test that shows low vitamin d etc and they then refuse to test for anything else.

      I came on here in desperation when the dr said no more painkillers, i don't like taking them but i would rather have a little bit of quality life, even the painkillers don't help totally but they ease the pain enough for me to be able to move.

      I am a lecturer so i have to be on my feet all day and the last few weeks i have struggled as we are so busy.

      i would rather they found out what was wrong and could go on a medication that stopped the pain or flares or whatever i have, then i wont have to fight anymore as everyday is a fight as it is.

      Although i don't like hearing that other people on here have suffered like me it is comforting to read that others had the same struggles and then there was a light at the end of the tunnel. xx

       

    • Nu2this
      Nu2this jane56403

      Posted

      Hi Jane,

      I am sorry that you are going through this. Sometimes i feel prayer and meditation is the best medicine. You can overcome anything with Jesus. I hope you get the diagnosis you need. Another thing that I been looking into is changing my diet. I been using a lot of ginger, tumeric and oregano in my meals/teas. They have alot of medicinal benefits. Look into foods that work for you and read their benefits online.

    • cherylnanny
      cherylnanny jane56403

      Posted

      Hi Jane. You sound more determined to get to the bottom of this. A copy of your post should make any health professional take you more seriously. Keep us posted on what is sure to be positive progress. Keep pushing, there is light at the end of the tunnel. x
  • hope4cure
    hope4cure jane56403

    Posted

    Ask to see a rheumatologist. I have very similar symptoms was diagnosed with fibromyalgia.

    Good Luck on your journey.

    Hugs ,

    Hope 😊

  • jane56403
    jane56403

    Posted

    Thanks everyone for your help, i have made a Dr appointment with the intention of telling them i cannot go on like this, only problem have to wait until 30th November for it, made the appointment a week ago!

    Sitting here with my feet on fire and shooting pains so bad i have been crying.

    I have taken the 3 painkillers a day as the Dr ordered and the result is i don't sleep properly because of the pain. My husband says he hears me moaning in my sleep, i have not had a whole nights sleep since i cut them down due to severe pain, the pain is exhausting, the last week i look awful as i am trying to manage, disturbed sleep, work and home.

    I plan on telling the Dr i need a referral to not only a rheumatologist but also to a pain clinic.

    I still cannot believe a dr would rather see me in severe pain than find out what is wrong, but i just know i will end up sitting there crying as i expect for the Dr to say the same thing they always say, "the blood tests showed no inflammation"

    Another funny thing this week is that alongside the burning internal pain in my feet i have noticed a lot of tingling, my feet are cold all the time and have had reduced feeling so bad i could put a hot water bottle filled from the kettle on them and they didn't even hurt, but yet inside they are shooting with pain and feel like they are burning.

    I know there is something wrong and i live in the hope it is found so i can possibly have some sort of quality in my life rather than this constant pain, it is a curse and at the moment i feel like i am fighting a losing battle.

    I will post up what happens on the 30th at the Dr and hope for some good news soon.

     

    • margaret22116
      margaret22116 jane56403

      Posted

      So Jane I had the very same problem with my feet. Happy to tell you that hydroxychloroquine took that feeling away completely. Diagnosis opens up the possibility of good treatment with the right specialist. You are doing everything you should do to make that happen so have some hope it can change for you. 
    • cherylnanny
      cherylnanny margaret22116

      Posted

      Hi Margaret

      How long did it take for Hydro such loris gone to start working for you?

    • margaret22116
      margaret22116 cherylnanny

      Posted

      Hi there ...almost immediately believe it or not. I went from extreme pain and being virtually unable to walk my feet were in such pain. Was living in one pair of boat like open shoes. Within about 2 weeks was wearing normal shoes again.
    • cherylnanny
      cherylnanny margaret22116

      Posted

      Hi Margaret. Thanks for your reply. I'm just coming up to two weeks and the improvement is very slow but sure. It's my wrists and fingers so I have been a little inpatient. Great to hear about your relief. Cheryl x

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