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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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  • MidnightMystery
    MidnightMystery jane56403

    Posted

    Hi Jane I have total sympathy for you I also have only just been referred to a rheumatologist after 11 years of increasing agony! Our symptoms are very similar. I'm so happy that your finally being heard and I understand what u meant by your husband believing you. We may look okay on the outside but inside its living hell. I wish u the very best x

  • jane56403
    jane56403

    Posted

    Thanks i am still upset that nothing is showing up that screams out what i have! that makes life difficult especially when you have someone say well the x ray only shows moderate change in your feet, you have osteoarthritis in your feet, the x-ray doesn't show the pain I'm in, it doesn't show me not being able to walk properly by the end of the week, or the tears i shed on a daily basis.

    Yes the pain meds help but they don't totally stop the pain, the pains i have gnawing away at my legs, hips and knees is still there as a constant reminder , the fatigue and the constant toilet trips, the itchy rashes and the depression just remind how much my life has changed in the last 5 years.

    I actually told the dr  i know my body better than anyone else and i know there is an issue i just need some help in finding out what that issue is, he agreed and said he was determined to get to the bottom of it, which is a huge step forward i suppose.

    Interestingly enough i have felt rather down since the visit, mainly because i was hoping for a clue to what is wrong, a hope that i will get better, looking at MS symptoms is scary and i hope i don't have that but my mum reminded me of the numb dribbling feeling i get on one side of my mouth, the involuntary eye movements i have sometimes and i fear that by the time someone says we know what's wrong the damage will be done.

    Having a referral is great, but i also fear that they will act like they did before and not take it seriously but hey ho what choice do i have!

    Have a great Christmas everyone, as pain free as we can all hope.

    I will post back on here if i ever get to the bottom of this.

    Much love

    Jane

     

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