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dr will not help me

  • By little8572

    Hi all I am posting on here in desperation, I have been suffering for 5 years with chronic pain in my feet, knees, elbows and now my left hip.

    initially saw a rheumatologist who said that there was no inflammation factor in my blood so I didn’t have rheumatoid arthritis and basically go away.

    Story since then is I take prescription painkillers, dr will not prescribe many so I spend my life in agony, trust me trying to run a family hold down a full time job etc and most days I am crying with the pain, I also have skin rashes, cant go out in the sun, low vitamin all the time etc.

    Today went to collect my prescription and told the dr has said no, I call her and she says that she will not prescribe any more painkillers, I am at this point in tears, how will I cope with the pain I ask?

    Her answer was I think the pain you are having in withdrawal pain in your joints she said listen your blood showed no inflammation at all .

    I had to leave work early today as the pain in my feet and legs was so bad I thought I was going to vomit,

    I am at my wits end, I know I have something wrong but this dr will not listen, I feel suicidal as I cant bare to go on in this pain.

    Can some of you please tell me how you got a diagnosis, was the rheumatoid factor found in your bloods, did your dr listen to you seriously, I really cant go on fighting like this.

    I don’t care about the tablets to be honest, I care about how I will cope with the pain and the fact that the dr will not listen to me.

    Please someone help me.

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  • By ktinflorida

    Find another Rheumatologist today. You may have to drive a bit to get to a good one, but they are worth it. University hospitals are a good place to start. I drive 6 1/2 hours for mine, past Mayo.

    Do you have a copy of your bloodwork? What tests did she run? Was your ANA positive? What was your SED rate? Does your doctor make sero-negative RA or Lupus diagnosis? Some won’t and that may be what you have run up on.

    Have you tried prednisone? Did that help? Do you have a general practitioner that would work with you? Maybe they would write a script for prednisone.

    I went through several Rheumatologists before I found a good one. The first two treated me basically the same way. I found that one didn’t believe you had anything unless bloodwork was positive. The other didn’t see the visible cues (hot, red, swollen joints), so he took me off meds. I could barely walk or get off a chair by myself. The third one LISTENED to me, put me on meds, and my life is infinitely better. My bloodwork eventually turned positive, but not everybody does. My RA is well controlled with DMARDS and biologics, so I don’t have to be on narcotics. You can get there too.

    The current medical environment is to blame the patient and treat them like addicts when they are in pain. It is an unfortunate situation for people with chronic illnesses. All I can tell you is to hang in there. Go elsewhere. Don’t give up. It may not be RA, but something is happening. Can you take Family Medical Leave from your job? Would your family doctor fill out the paperwork?

    If I could fight this battle for you, I would. I remember those days. Better days are coming. Let us know what your bloodwork says so we can try to help. Inflammatory factor – does that mean your Rheumatoid Factor is negative or is it one of the tests for inflammation that they are talking about? Two different things. If it is Rheumatoid Factor, ask if she makes sero-negative diagnosis or waits until that turns positive.

    In the meantime, we are here to vent to. OTC Naproxen Sodium is what my doctor recommended. You might try an anti-inflammatory diet. Some people say it helps.

    You are your best advocate.

    Take care.
    KT

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  • By little8572

    Thanks so much for your reply, I think they are just looking at tests for inflammation, Like I said to her if its not RA then help me find out what it is.

    My mother also has the same thing, she almost ended up in a wheelchair through not being able to walk, 10 years on she is a little better but basically just takes painkillers and told the same thing by a rheumatologist.

    I am at my wits end, how do I find another rheumatologist when I have to rely on our NHS? Last time I saw a rheumatologist was approx. 3 years ago, x-rays done on my feet which showed arthritis and he just said I will prescribe you amytryptolyne , I said no thank you to that.

    I thought drs were there to help, mine don’t care, the thought of living like this for another year fills me with dread, the reason I initially thought it could be RA was I show a lot of the symptoms, the first dr I ever saw also thought so as I was having pain that was symmetrical both feet, both knees and both elbows, the pain would then disappear from one area and move to another, my feet have always been the constant though, doesn’t matter if I am off them just in constant pain, like someone is hammering them.

    The last few weeks I have started to have hip problems, its almost like my hip is clicking out of place .

    All I want is a pain free life, I am 44 and at this moment in time don’t want to live like this.

    Thanks again for your reply x

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  • By ktinflorida

    I’m so sorry. I wish I had answers for you. I hear horror stories about NHS on other sites. I don’t know how to make them help you. One person said there was an NHS rights website that explained how to get a second opinion, but I don’t know anything about it. Maybe there are other people who have had success with the NHS on here and they can help.

    With you and your mom both having similar types of issues, it is logical to believe that something medical is going on and it should be fully investigated.

    I guess you can always pay money and go to a private doctor outside of the NHS, but I doubt money grows on trees over on that side of the pond either. If I hear of any way to get help through the NHS, I will try to update this post. Please let us know if you figure out something.

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  • By little8572

    I say thankyou as I sit in my dressing gown dreading a painful day at work, I have no motivation anymore and need to find a way to lead a life that has a little bit of quality, at the moment my whole family are suffering and my husband already turned to another woman a few years back, I fear he will again.

    I think the key is to find a dr who will listen or look a little further than well this test is negative.

    I think both myself and my mother have something whether it be lupus, RA or something else, apparently her father my maternal grandfather also did at one stage end up in a wheelchair with similar things, but unfortunately he died a while ago and so that avenue is closed.

    All my mum would say was she remembers him being in a wheelchair and then whatever he had just burned itself out?

    All I know is I cannot and will not go on like this, being made to feel like a drug addict, I don’t care about the tablets all I care about is the pain I am in.

    Thankyou for your concern.x

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  • By Hholly

    Sorry you are going through all that.
    Yes, you need a different doctor. Many people have RA who don’t have a positive blood test. Also, if you have a skin rash, you may even have psoriatic arthritis. I worry that your doctor cutting you off pain meds so abruptly could be giving you withdrawal symptoms too. Hugs to you. I hope you get a doctor to listen to you. You deserve better treatment from them and from your family.

    Take care.

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  • By CaseyH Moderator

    Hi little8572,

    I’m so sorry for the delayed response to this thread, as I just stumbled upon this myself. My heart is so heavy reading about all you have had to endure. You have been ferociously fighting this battle like a true warrior. Please please continue to push forward, and know we’re here for you whenever you need to vent, talk, or just when you need a little pick-me-up! You are so not alone in this, and we really appreciate you sharing your real and overwhelming feelings with us. We’re glad you’ve found our community, and hope you will find strength and comfort here.

    In addition to being a part of our community, we also encourage you to reach out for support from in-person options as well, including counselors, medical professionals, support groups, and more. RA and other pain-causing conditions can take such a toll on the body, and on the mind and soul. We want you to be healthy and to experience life to the fullest. Please consider looking into some of these options if you are still feeling overwhelmed and defeated. It sounds like you may be in the UK from your comment, so I’m not sure if all of the resources in this article will apply to you, however, there are a ton of great options to look into at this link that may help you get started in this endeavor, https://rheumatoidarthritis.net/mental-health/coping-general-resources/

    I’ve also found an article on taking care of our mental health that I thought may resonate with you, https://rheumatoidarthritis.net/living/dont-neglect-mental-health/

    Although you may not be in the US, if you ever need it, please do not hesitate to reach out to the National Suicide Prevention Hotline online with live chat at http://www.suicidepreventionlifeline.org. We are so glad you reached out here, and welcome you to do so ANY time. We’re sending hugs your way, friend! Hang in there!

    Warmly, Casey (RheumatoidArthritis.net Team)

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  • By moona1

    I went to my primary care and said they don’t let dogs suffer like I’m suffering! So now my R A Doctor handles my infusions and my primary care my pain it’s worked out in the end but it took alot of crying and bitching for years to get what I need from the RA Dr. Wish I went to the primary first

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