General Doctors need more education

I went to see my general Dr. yesterday and came home very upset. She didn't seem to understand that my RA is not allowing be to be a RN at a big hospital. I haven't worked since January and now my work has "left me go". She stated people with RA can work. I have been approved for long term disability by my insurance company and I am working on Government disability. She seem so upset because I was on disability! It took 5 month of sleeping and resting to get my feet and hands to stop hurting. My drugs didn't work until I didn't stop working and got the rest I needed. I can sure tell she see me only after the fight with my body. I need her for control of my blood pressure so I don't see her often. The surprising thing about this is she is the one who a year and a half ago diagnosis me with RA. She also felt that Vicodin was not needed for RA. "Vicodin doesn't get to the root of the cause". Vicodin was order by my Rheumatologist, just last month to try to get me more comfortable and tylenol #3 isn't working. I have been on predisone, plaquinal, methotraxate and Remicade since I was diagnosis now. I am finally had a week without flare. I finally think we might me getting this under control and she wants be to go back to what caused the continue flares previously. Sometimes I think I have too many Dr. and one doesn't know what the other is doing. Thanks for listening. I need to get this off my chest

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  • You poor thing- it is hard enough that you have to struggle with RA and battle that every day, without having to take on a battle with your care givers.

    Getting things off your chest is what we all need to do, if we don,t it builds up and that in itself does not help our RA.

    Personally, I ensure that my Rheumatology team are the only ones who prescribe for me regarding RA, and although my GP referred me in the first place, she has little to do with me except a check in with her every now and then. Would this work for you?

    You also say journey employer " has let you go" I am not sure about the legalities of this, especially if they " have let you go" because of your RA. Check with NRAS- they have leaflets and advisors for this very topic. And there are fairly substantial guide lines for employers to follow with regard to this crippling disease. Although I know the NHS can be a horrible employer for those who become ill, I am certain they cannot dismiss you because of RA.

    What causes flares- oh my goodness if any of us knew that we would be able to avoid

    I am sorry you are having such a hard time but many people here can support you, well virtually anyways

    There are also quite a few nurses on this forum, including me, so if you want to send a PM please feel free

    Gentle hugs

    Katie x

  • I am sorry you have had this experience. We all know what the "root of the cause" is - our bodies are attacking us!! The thing is - they don't know why, and hence we are all put on lots of drug combos to find out the best treatment (not cure - yet). I would change your GP and try and find one who is a little more understanding. I hope you feel better soon x

  • I think you are in the United States Katie?

  • No Tess, I am in here in Scotland

  • Sorry Katie I mean't to ask that of Darice! It was her use of the hash key and mention of insurance that made me ask, or I might just be watching too much american stuff on TV!!

  • Laughing- she does appear to live in the US, and that explains the term RN and the use of Vicodin. And I probably watch as much American stuff as you- addicted to NCIS and House, even although Hugh Lawrie is from this side of the pond

  • It's so difficult to explain how RA affects us, even to GPs I know. Like you I have to rest much more than I'd ideally like to in order to live an otherwise normal life & at my best I'm sure I look like someone who could work full time, but I know what a week or two of full-time work would do to me. My Rheumy & Rheumy nurse acknowledge the seriousness of my disease & my husband often says that he has great respect for the way I cope with it, which is heart-warming, but I don't think anyone else really understands.

    I find it very, very difficult to explain this condition to people, it's almost like I've got a mental block about it. I'm quite articulate about other things but not this & as soon as I start trying to say anything coherent I stutter & stumble. I think you express your battle to keep RA at bay much better than I usually manage to.

    I agree with tess that changing your GP seems like a good idea although maybe you could psyche yourself up to go back to her and address her ignorance head-on. I've sometimes found that getting things off my chest on this forum sets me up for tackling such things. But whatever you do, rest assured that you're not alone in this predicament & everyone here understands your situation.

    All the best to you, Luce xx

  • I do live in the US Milwaukee, Wisconsin. Thanks for all the support. My job was a Vascular access nurse. You walked through out the 8 floors of the hospital and did repetitive work with my hand. I had a function eval test and my RA Dr use the results to create my limitations. So my work has disabled me and this disability last until I reach retirement age or get well enough to return to work. They stated when they said I had no job that when I became able to work in a job I should call them and they would help find a job for me. So far I have to take care of myself and worry about work later

  • Hi Darice, I too suspected you were a US native :)_ I am in Northern Ohio, just 15 miles from Cedar Point. I have been off work, on disability insurance and SS Disability, until retirement age, then was switched to reg. Social Security. Until age 65, I was receiving 70% of my gross pay, which is pretty much the same as take home-pay. But, when Disability coverage stopped, my income dropped substantially. I am a Med. Lab Tech, primarily Microbiology, though also had to work in Hematology and Chemistry to cover absent techs. I was very fortunate to be offered Disability Insurance, knowing my Psoriatic Arthritis had a poor prognosis. Did not have to pass any insurance exams.

    My long-term disability was eventually decided to be permanent, unless I found I could actually return to work. Being in a laboratory, there really wasn't any situation I could work at, even part-time.

    One thing I experienced was, knowing there were some techs in the lab who questioned my inability to go to work on some "flare" days, though I knew there were plenty I did work and should not have. Once it was establiashed, by Insurance and Social Security investigation, that I was permanently disabled, and I would run into someone from the lab while in a powered wheelchair, then the attitude changed. But I had to put up woith some rude and sarcastic comments, or overheard some while I was working.

    I resented that, I was good at what I did! At the time, my hands were not affected so much, and I was one of the techs often called on to do phlebotomy on a difficult patient. It was walking to get there that was difficult and very painful. Have had 8 spine surgeries, some of them during the time I was employed. I suppose there were some who resented covering my position until I could return to work.

    So I know exactly where you are coming from! You are right, take care of you first. I should not have returned to work after the last spine surgery, my spine is full of titanium rods, screws, plates, and maybe even twisties and Elmer's glue :)

    Sorry for the length, just wanted to assure you, you are not alone. This site is full of fabulous people! Loret xx

  • PS: My "endurance meds" consist of Vicodin, Neurontin and Ultram, perscribed by Rheumatologist. My GP is in agreement with my Rheumy, so I am in pretty good shape, with MTX, Arava and Simponi

  • Yes Darice, absolutely you must take care of yourself first. I sometimes wish (tongue in cheek) that our joints glowed and flashed green or something when they are hurting, so many people cannot relate to constant pain. I do wish you well x

    PS I would still change your doctor!

  • Sorry to hear this, Vicodin may not help the root cause, but when you are in so much pain, you need pain relief!! How single minded. I hope you get well again and do eventually return to work again. I was a nurse too until I applied for my ill health pension on NHS. It was that or they would sack me on capability, Katie C, they can sack you! I cannot believe how the health profession do not help & look after their own staff, but that is or another day. Take care x

  • They were starting to sack me. I was getting improve in 60 days, monthly meeting with the boss, Any error I made was written down and my coworkers(who I thought were my friends) help her. So I too applied for disability

  • Went through that darice! It took away a lot of my confidence until I handed a file to my manager of their comments and discrimitory phrases to her he dy I left, she was shocked and it seemed to make her realised I had done nothing wrong but be bullied. Left, got a much better job where I was very happy xx

  • Hi Darcie.

    I'm so sorry that ur employer is so short sighted to let you go, after all it's understandable a hospital as large as you describe does not have a more sedate nursing role you could undertake!!!! Seriously I'd look into the guidelines re dismissal due to RA. I too am a RN in the uk in a large hospital I've been off work for 2 weeks now as my RA has been in a flare for months I really feel for you when u say its taken 5 months to settle your pain.

    It sounds like your General doc needs a lesson in LISTENING to patients. I find it a lot easier to tell my general dr what needed backed up with a written advice from my Rheumy. I know things can be hugely different in the US but change ur DR.

    And to top it all off have a gentle Hug and I'm sending a sprinkling of get well soon dust over to you

    Cara xx

  • Hello I am new here and still waiting for a diagnosis. I have a lot of pain in my hands and knees mainly but other places too. Blood tests show moderate levels of serum lgG and lgM. I have chronic denervation and renervation in FCU and FDIO muscles in my right arm and marked fall out of motor fibrers. My arms and hands are weak with poor grip. Both hands swell but the right one is worse. I feel achy most of the time and very tired. I have good days and quite bad days when I feel totally exhausted and in severe pain. I have always had low blood pressure but that is now high. I have gastric reflux and chronic sinisitis with regular headaches. I have an underactive thyroid diagnosed 6 years ago. My skin is very dry and sometimes my hands and feet get angry patches that peel. My GP thinks it may be RA and I see a specialist in August. My mother had Scheloderma. I am so anxious for a diagnosis.

  • Hiya, why don't u write a blog, you will get lots of help and some people here have scleroderma I believe? X

  • My GP has recently admitted that I was her only patient with RA. I did find this quite astonishing because I thought that GPs would see many people with RA during their surgery. Fortunately, my GP is wonderful. She has prescribed me with codeine, paracetamol and amytriptiline and lanzoprazole. She is my point of call to control pain on a day to day basis.

    She recognises my limitations and has written to support my application for DLA. Obviously, I was turned down even with her letter, but that was not her fault. She understands that I must be working part-time and has even suggested to cut my hours, if I could, to no more than 3 days a week and if I could financially afford it.

    I always see this same GP and I have developed a good relationship with her. Perhaps, that's what you need to do. Find a good GP (trial and error) than when found, stick to that GP.

    I am 4 years RA down the line, and I'm still trying to find the DMARDs that will give me a break. I am still waiting and hoping.

  • I changed to this general Dr. because the one before told me was swollen fingers were due to being fat. In general she (general MD) has been very supportive. I am going to put in down as a bad day and since I only see her every 6 months, see how she is then. If she still is non supportive I will need to change. I have loved her up to this point. I think she is getting overloaded with paper work and me being disable just adds more

  • I have two great gps who u can never get into see as thy r so popular, and three others who have said to me, why r u walking like a penguin, what's Humira and you have a bit of arthritis then? I stick with the good ones even if I have o wait as the others are not worth getting upset over.

  • I also went to see my doctor this week as I am in so much pain. I have not had a full diagnosis as yet so I am on tramadol and 600mg ibuprofen a couple of times a day. I have been like this for nearly a year and they are dragging it along I start on sulfasalazine in july but went to the doctor as I am in to much pain to wait. He said there was nothing he could do as it was not his speciality and my only other option was to go private. I was discussed, why should I go private when we have a national health and one that I have paid into since leaving school. I will not go back to the doctors again.

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