Believe i have RA need advice details below

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tashaharris
tashaharris Member Posts: 4
edited 8. May 2014, 20:30 in Living with Arthritis archive
Hi My name is Tasha Im 25 and have to kids ages 4 and 1. I have been suffering with rheumatic pain and joint problems from the age of 13. Having been to 3 different hospital physiotherapy departments they had no idea what was causing the pain so just stopped treating me altogether. After finding things harder to do day to day i was convinced something was really wrong and went to see a different GP who after hearing all of my symptoms told me he believed i had RA. I was not surprised to hear that as it runs in both sides of my family quite vastly. He took a blood test to determine whether i did or not. The results came in with high levels of inflamatories. So he referred me to a rheumatologist. I saw the rheumatologist 5 weeks later who stated after 20 minutes and not all to much information that in her opinion i only have Fibromyalgia and my blood tests were 'normal' even though i ha been told they were high.There is nothing wrong with my joints and its mixed messages coming from my head. Confused and baffled i left partially accepting this but now after coming to my senses i cant see how when my body is physically stiff and clicks and grinds like crazy all the time day in day out and the history of my family is so strong how it cannot be RA. I plan on going back to my GP nut am unsure on what type of action to take. I need to do this right so i can get the right treatment for the sake of my kids. any advice is really appreciated thank alot.

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  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    Hi Tasha, your story sounds so similar to yours that we could be twins!! My troubles started at 12/13yrs old, wasn't until I was in my late teens early 20's that Fibromyalgia was mentioned then after seeing so many different Consultants that I was given a bone density scan that showed how seriously bad things where (I have Osteoporosis & R.A). So ask your G.P for a 2nd opinion and if you have a good relationship like I have with mine they will do it. As I say what you have said is soooo identical to what I went through you could be me! Spooky!!! :o
  • Doubleouch
    Doubleouch Member Posts: 33
    edited 30. Nov -1, 00:00
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    Hi
    I really feel for you and if your markers where raised enough for your GP to send you to rhemmy,then obviously was something not right
    Personally I would go back to your GP and as others have said ask for a 2nd opinion

    When the rhemmy said you had Fibromyalgia did he do the tender point test?
    Ihave fibromyalgia along with OA , the rhemmy sounded rather uncaring who told you you only have Fibromyalgia as Fibromyalgia is a chronic painfull condition and certainly is not in peoples head, although the older school doctors do seem to think it is
    I was dx 18mths ago with Fibromyalgia and have had to had 3 new glasses prescribs in thst time as Fibromyalgia is having a go at my eye muscles
    x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh crikey, this doesn't sound right to me (but I am not a doc, let alone a rheumatologist). RA is one of the many and varied forms of auto-immune arthritis (of which there are close to 200 hundred kinds) and I suspect you have lucked-out with the rheumatologist you saw (I did too with my first one, I met a bloke who was coasting towards retirement and told me it was not RA or anything like: sadly I have proved him wrong).

    GPs know a little about a lot (and I reckon your second one is on the right track) but the referral was not ideal. I am now thirteen years beyond my first referral but I hope you will find the courage to ask again to see a different rheumatologist: I have an auto-immune kind which has led to osteo and fibro and I can tell the difference between the three. :( I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    The GP who referred you clearly had some knowledge and interest so I'd go back to him. He should, by now, have got a report from the rheumatologist so you can explain your fears and ask any questions you may have.

    The family history should sound warning bells but doesn't mean to say you have RA. Many experts consider fibro to be an auto-immune disease too so you could have 'inherited' it. Also, I don't think that high inflammatory levels alone would bring about a conclusive RA verdict. ('High' is a very imprecise term anyway.) Have you been prescribed any medication? Did the rheumatologist do any further tests?

    Will you be seeing your consultant again? That, to me, would be the key. If you're to be seen again then you will continue to be monitored and more might reveal itself in time. If she doesn't want to see you again then I suggest an ongoing relationship with the GP. If things deteriorate ask to see a different rheumatologist.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi;

    I went for years living in pain but no diagnosis and this is very hard on a person emotionally, not to mention physically. I would stick with your GP and maybe ask to see a different rheumatologist. Maybe it's not classic RA that you have, but there are many types of inflammatory arthritis and you may have a different type to the rest of your relatives. I was initially diagnosed with RA and was told I couldn't have RA because I had no really obvious swelling. I ended up diagnosed with a seronegative arthritis.

    My PsA was diagnosed partly by my response to a trial of prednisone; I improved on it, therefore I have an inflammatory illness. Luckily I had/have a rheumatologist and GP willing to consider this, listen to me and begin treatment before I was officially diagnosed. My bloodwork is consistently normal and I only ever have mild swelling, but I am disabled by severe pain and fatigue even though I was formerly a hard worker and physically very active.

    Don't give up. Someone will figure out what is wrong and get you on appropriate treatments. In the meantime take care of yourself.

    Best wishes, Anna
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Tasha and a warm welcome from me
    You must go back to your GP and to be referred to another Rheumy, I am a lot older at 63 but have gone through he same with a Rheumy 4 years ago ..he just wasted my time, so last week I saw another one and what difference ,he spent over an hour with me and went back to my teens... so go for it..and please let us know how you get on.
    Love
    Barbara
  • tashaharris
    tashaharris Member Posts: 4
    edited 30. Nov -1, 00:00
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    hi everyone thank you very much for all your replies. When i saw the rheumatologist the appointment lasted around 20 mins and i was prescribed an antidepressant called AMITRIPTYLINE 40MG A DAY even though i am not suffering from depression. And GABAPENTIN 600MG 3 TIMES A DAY. This is a pain killer i was told to take. I am going to be honest with you all i do not believe in mind altering drugs and such like unless is absolutely necessary and i never believed it was so have not taken any of these drugs. It was also decided by the rheumatologist that twice a week i would see a psychologist to help 'train my brain' to think properly without sending pain messages. To me it sounds rather bizarre
    I was surprised when she mentioned AMITRIPTYLINE as i had heard from other people that this was a well known anti depressant. i have just been referred back to the care of my GP and told to continue this medication routine.
  • tashaharris
    tashaharris Member Posts: 4
    edited 30. Nov -1, 00:00
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    hi everyone thanks for all your replies. just to answer some of your question i was only in the rheumatologist's office for around 20 minutes wasnt really interested in my history just brushed off RA due to my only being 25. She asked about my previous physiothereapies i had been to before and asked me to go behind this curtain put me through some form of torture in and even though i told her i couldn't go further or it was too painful she still made me keep going kind of horrible tbh. i then told her i started to feel pain in my hand over the last few months and felt i was losing power in them sometimes finding the most simplest thing like opening a bag hard. So she took and ultrasound scan of one of my hand and told me it was near enough impossible to be arthritis its just fibromyalgia which means its all in my head. She then said i would need to start a course of drugs and psychology sessions twice a week to get my brain to think straight. Sounded rather condescending, the mediaction was rather extreme in my opinion as she prescribed and anti depressant called amitriptyline at 60 mg a day. And then a strong pain killer called gabapentin 600mg 3 times a day. i came away shocked as i was told i was only go to see my gp if there was a problem with my mediaction and they no longer needed to see me. Im going to be honest i dont believe in taking mind altering drugs unless you really need to and i DO NOT suffer from depression so feel taking an anti depressant is extreme. And 600MG 3 TIMES A DAY of a drug like gabapentin will have me walking around like a zombie when i have two very young children to look after. im struggling more every day but have no choice i have asked for help so many times to now be officially told it is in fact in my head horrible . and dont know what to do next apart from try again.