I really need some answers now :(

Posted , 6 users are following.

Hi.

I first went to the gp about pain in my hip/thigh area back in april. I was eventually referred to rheumatologist after my blood test showed inflammation. I had xray and general exam but everything normal.  I was booked in for mri of my hip some wks later, inbetween that time i started to have general joint pain, mostly wrists, knees and ankles, big toe and middle fingers. I had general feeling of not being well, like flu or virus. I returned to consultant for results of mri, i was convinced itwas going to show something, everthing was normal.. I told consultant how other things had been effecting mebut he wasn't interested really. Said i should go back in few months and if hip no better he'd refer me to surgeon tohave a look. This was back in july and since then everything is so much worse,i just don't know whats wrong with me. I am always in some kind of pain in my joints. but i can deal with that it's when i get really bad, right now my wrists and  hands are so painful, achy, sharp stabbing pains stiff fingers, my face feels tingling even my lips sometimes, tingling in my arms and fingers, i've had flank pain,that comes and goes too, i just feel awful and i just don't know what is wrong..

 I'm due back to hospital inoctober but i feel like i'm making a fuss and that consultant won't believe me and dismiss what i'mtelling him and i'llleave,as i did last time, lost with no end to this in sight.

I used to be so active, exercising 4 times a wk,no problems but in the last yr i'm a different person. Everytime i try to take up my classes again i have to stop because i'm exhausted and my hands hurt to much.

I should add my rheumatiod factor was neg and apart from a little swelling around my hands nothing else is visable. Lots of other differnt things that may or may not be connected..

If anyone has any clues as to what might be wrong or has similar i'd   love to hear from you.

Thanks

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  • Posted

    By consultant you mean a board certified rheumatologist?

    Honestly, I really wonder about the rheumatologists in the UK. What kind of education and training do they have? [I mean no offense, but time after time I read posts on this forum that relate that the “rheumatologists” are very dismissive, that they are not aggressive in their diagnosis and treatment.] They need to understand that this disease flares, and though there may  not yet be evidence on x-rays, it doesn’t mean the disease isn’t lurking in the background. After all, you have blood results that show inflammation.

    It sounds to me like you need to go to another rheumatologist. From what you wrote, it’s not clear if you were given any diagnosis. The sooner you have a clear diagnosis, the better. You need to “knock down” the inflammation. Chronic pain over time is debilitating, not to mention painful.

    Another very important point:  Over 20% of all people with RA are sero-negative. That is, we always test negative on the rheumatoid factor. I am one of them. I was diagnosed over 20 years ago and have had the test about 4-5 times – always negative. Additionally, ESR always is normal. My CRP, though, is always elevated.

    You need to be your own advocate. Make yourself heard. And if you’re not, find another doctor who actually listens AND understands this disease.

    In closing, it’s important for you to get on DMARDS very, very quickly. Once the damage happens, you cannot reverse it.

    Good luck!

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    • Posted

      Hi California Lynn,

      You have a lot of experience and research on RA to share. Many appreciate all the many contributions u have given on behalf of the RA  support group.

      Everyone has a right to their own journey to medications available for RA.

      Sometimes some of the statements seem adamant. I think u do mean well and really want to help. The patients doctor knows the individuals medical history and there is the quandary. The patient dr relationship is important for any meds discussed, used or any other method they choose.

      People come here are suffering and don't need to be pushed into beliefs or scared by statementts that has gone with the searches that seem to be a constant suggestion.

      If certain meds works for u that's great. I wish u continued success. Some of the drugs r very hard core and some haven't been on the market very long to make most RA patients feel confident or safe. It's normal to have second thoughts. Not all drugs work the same on everyone. We are all well aware of the permenant  damage RA does.

      Be kind, UR full of information. Others come here for support that is a big definnation . Usually beliefs systems are included. Others here can make their decisions based on their dr references and by other criteria required for each individual. They r just as capable as everyone else to make their own decisions and do thier own research . confused

       

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  • Posted

    Thanks for you reply CA-Lynn. Yes a rheumatologist at addenbrookes. He is very nice but it seems that because my RF was neg and no swelling he just concentrated on the reason i'd been referred,my hip pain. I almost felt embarrased to say anything about how things had developed in other joints and not feeling well. I actually had a cold, was a bit bunged up etc. so when i explained how i'd had a couple of flare ups of virus like feeling and joint pain over the couple of months, he put it down to the cold i had then! i tried to say the cold had only come on the last couple of days.. but i almost felt like he thought i was making it up. In fact when i left i told myself to stop making afuss and that i was talking myself into feeling the pains. so no i haven't been diagnosed with anything. That's what is so hard, i have no name for what's wrong.  All i can say to my family is that i have alot of pain etc. They don't understand, and i don't wanna keep going on about how awful i feel.I just wish i could get back to normal.
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    • Posted

      Maybe you don't find my comments helpful, but it's time for patients in the UK to be their own advocates. Instead far too many seem to be in pain with no real effort from their doctors. I don't hand hold. I tell it like it is.

      It's YOUR body and YOU pay for the medical treatment in your country and YOU have a right to solid medical care. When a doctor "dismisses" symptoms and focuses on something else, the patient needs to stand up and say something.

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    • Posted

      Well said CA-Lynn, spot on, I totally agree with you, I have experienced this first hand, I am now watching my son aged 28 suffer daily pain due to the incompetence of one particular RA consultant who told my son that he "thinks his acute RA would burn itself out", it didn't and now my son has deformities in both hands, has had one hip replaced with the other due to be replaced early next year, my son was first diagnosed aged 18 and his life is largely ruined now as he is mainly housebound due to the pain and bodily embarrasement, this all down to the ineptitude of a consultant that should have known better and not gambled with a patients health... My reply to anybody now would be, "don't be fobbed off, make as much respectful noise as is possible in order to be heard" and helped in preventing what my son and others are now having to go through...
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  • Posted

    Sorry to hijack your thread, but i just wanted to ask how long you had to wait for an MRI scan after referral, and then how long for a rheumy appointment? I've just been referred to Addenbrookes for both those things, though for AS not RA, and I'm really anxious about it.

    Thanks

    jackie

     

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  • Posted

    Hi Jackie,

    I was referred by my GP and i had an apt within a week and half. Whist in the clinic i was sent for an x ray which didn't reveal anything, so the doctor booked me him for a mri, which i had within 8 wks from that apt.  Hope that helps!

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  • Posted

    Thank you very much, that's a big help. I hope you get some answers soon.

     

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