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  • Am I just being a hypochondriac?

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    Old 01-01-2014, 11:06 PM   #1
    Midnightmuse
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    Am I just being a hypochondriac?

    My hands burn and ache, they have off and on for over 2 years now. I am starting to feel like a hypochondriac complaining to my doctor, but this isn't right. (full disclosure, I am a life long asthmatic with an arrhythmia)

    The first time I complained, my doctor sent me to be fitted to full forearm/hand braces to sleep in. She was sure it was a return of my carpal tunnel. I only suffered from CT during the last months of my pregnancy 7 years ago, but I had pre eclampsia and was swollen like a toad from edema, so it was no surprise when my hands started feeling like they had fallen asleep constantly, and I had trouble gripping things. This was a different kind of sensation. Plus, when I had CT, my thumbs and pointers tingled the most; now the burning and aching is worse in my pinkies and ring fingers.

    The braces seemed to help a bit, I am a bit of pain medication phobic as they always make me very nauseated, so I was content for a while to just wear the braces. But the aching/burning continued.

    As time progressed, my hands started getting very cold, even in mild weather, and my knuckles are constantly bluish purple. My doctor dismissed these as signs my asthma was not being well controlled, and increased my inhaled steroids. The aching seemed to subside a bit, but I now believe this might have just been a chance remission of symptoms well timed.

    When my knuckles and first finger joints began to swell, my doctor ordered Xrays and an RA factor panel. Both were negative. Since then, every time I bring up the aching and pain, she tells me I was negative for RA and any of the joint conditions that show up on Xray (pseudo-gout runs in my family quite extensively. Auto immune disorders do as well, my sister has terrible plaque psoriasis).

    In the last year, my aching and burning has spread from just in my hands to my fingers and wrists, my finger joints look even more odd, and my fingers are no longer straight. Now, I am starting to have aching in the balls of both feet.

    When I complain, I get the 'you do not have RA, we did the blood test' line. She then goes on to point out my extensive lifelong steroid use starting at 6 has aged my body, I just need to to come to terms with getting old (I am in my late 30's). Take ibuprofen, drink water, exercise, that's what the doctor says will help.

    I know I am not the picture of health, I know I am susceptible to many illnesses that can make you feel crappy, but this is different. This is not thrush or strep, it is outside of the chronic problems that are related to my asthma. It is a separate and I am not ready to say I think it is RA, I just know it's not normal.

    It has gotten to the point I am embarrassed to even bring it up to my doctor, because she is so firm; but the aching and burning is real, and I am starting to lose hand strength too. I can no longer open jars, and in some cases screw off top condiments. My hands and forearms are so stiff in the morning I feel like I am fumbling in mittens to get ready. I wear a uniform and getting the buttons done is becoming a nuisance unless I wait a couple hours after getting up.

    The burning and aching is keeping me up, and waking me up. Now as my feet start this same process, I am starting to think I am crazy. I have to get my 7 year old child to open my pill bottles for me, I had to get en electric can opener. This doesn't seem normal to me, but perhaps I am just being overly sensitive. Other than this, I have found my doctor to be very good, which makes me feel like maybe I am blowing it all out of proportion. I really cannot get a second opinion without her blessing and have my insurance cover it, but she is dead set there is nothing wrong except some mild repetitive stress issues related to my work as a admin.

    She's the one with all the medical training, I feel foolish second guessing her. I am tired of feeling this way, though, I want the aching to stop.

     
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    Old 01-02-2014, 07:05 PM   #2
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    Re: Am I just being a hypochondriac?

    Hi,

    I have different issues, but feel this way a lot.

    Any chance you can see another Primary Care Doc for a second opinion if your doctor won't give you a referral to a specialist? If not, it sounds like you need to tell your doctor you need a referral and push for it. It is so frustrating, but don't give up fighting for yourself.

    I have had a lot of doctors who have put me in similar situations over the years, but just this last year, I had one specialist tell me how great it was that I advocated for myself and another hand specialist who told me he actually recommends second opinions to some of his patients.

    Stay strong and keep pushing.
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    Old 01-04-2014, 12:36 PM   #3
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    Re: Am I just being a hypochondriac?

    Hello, my heart goes out to you as living with such a debilitating problem is not easy, especially when you are not getting any answers.
    You say that you have x rays and blood tests for RA. I presume that OA was also ruled out by the x rays.
    You could be developing a neuropathy that has not yet shown up in tests.
    Have you or your doctor considered a problem in your cervical (neck) spine?
    Although I have arthritis in my fingers and have had my thumbs pinned and fused, part of the neuropathy in my hands is from c5/6/7 damage to my neck sustained in a car accident many years ago. Latent spinal problems can also affect feet.
    An aching burning sensation is classic in neuropathic pain. Your family history of auto immune problems could very well be relevant.
    You seem not to be able to go and get a second opinion which is a shame. In the UK this is not a problem. You need to get to the bottom of this and find some real help.
    I see that you work in admin. Do you do a lot of typing? Repetitive Strain is common in typists and can lead to early onset arthritis/neuropathy, especially in the cervical spine and hands.
    It is true that long periods of steroids can affect our bodies (I have had lots of injections and am asthmatic) but this should make your doctor more sympathetic and ready to help you.
    You do not sound like a hypochondriac to me, just someone desperate for help and practical answers.
    I would keep plugging away at the doc and send you my very best wishes for some relief soon.

     
    Old 01-04-2014, 02:38 PM   #4
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    Re: Am I just being a hypochondriac?

    First off, your symptoms are suggestive of RA, and up to 40% of people with RA have negative blood tests for it. There is a more sensitive test than the RA factor- an anti-CCP antibody test. Plus sed rate, CRP, ANA (to rule out lupus) should be done. You really need to see a rheumatologist. An MRI of your hands may help establish a diagnosis if joint erosions show up. Your Dr. is apparently not aware that RA can be present with a negative blood test, and she is being less than helpful in telling you this is aging from steroid use. On the contrary, steroid use is probably helping your joints, but it sounds like you need more specific and stronger treatment. Can you see a rheum without a referral? That would be your best bet. You are not being a hypochondriac! If your fingers are getting deformed, something is seriously wrong, and you need and deserve help with this.

     
    Old 01-04-2014, 02:59 PM   #5
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    Re: Am I just being a hypochondriac?

    Midnightmuse,

    I am so sorry you are suffering, and kept from proper diagnosis by not being referred. You are not being taken seriously, and you are not over-reacting. Doctors are not god and they regularly make mistakes. We need them, but only when they will listen. A doctor told me doctors cannot heal and that the biggest part of facilitating the process of healing is putting the mind at ease. A good doctor should accommodate your very real concerns. Don't give up.

    You may benefit from a nerve conduction test, which is administered by a neurologist. One way around a single minded doctor is to ask the doctor to please humor you (use those words) and refer you for a nerve conduction test.

    Also you call your insurance company and request a complete change of medical groups. I changed medical groups many times, and never will stay with a doctor that belittles my point of view. It is your body. We need doctors, but not one with a closed mind.
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    Last edited by Administrator; 01-04-2014 at 03:12 PM.

     
    Old 01-08-2014, 05:39 PM   #6
    Midnightmuse
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    Re: Am I just being a hypochondriac?

    Thank you everyone, it makes me feel stronger in my convictions that there is something wrong other than just getting old.

    I spoke with my father about all of this, and he is willing to help me cover the cost of an initial consult with a Rheumatologist, regardless of a referral or not. I am unsure of what I will do if extensive testing is required, but I am planning to call my insurance and talk to them as well.

    Thanks for the support!

     
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    Old 01-17-2014, 04:16 AM   #7
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    Re: Am I just being a hypochondriac?

    Quote:
    Originally Posted by Midnightmuse View Post
    Thank you everyone, it makes me feel stronger in my convictions that there is something wrong other than just getting old.

    I spoke with my father about all of this, and he is willing to help me cover the cost of an initial consult with a Rheumatologist, regardless of a referral or not. I am unsure of what I will do if extensive testing is required, but I am planning to call my insurance and talk to them as well.

    Thanks for the support!


    You're very welcome!
    Please let us know what you find out and how you are doing!
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    Old 05-31-2014, 08:26 PM   #8
    Midnightmuse
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    Re: Am I just being a hypochondriac?

    Update

    I am so sorry it took so long to get an update out.

    So, where to start.

    While my insurance would not require me to have a referral for an in network specialist, I was unable to get a rheumatologist to see me without a referral, so I went to my primary care again, and point blank told her I wanted a referral. She said if it would make me feel better to get a second opinion, she would order a referral. It was clearly a patronizing move, but I really did not care.

    It took several months on the waiting list, but I got in to see the rheumatologist finally. Before I even went, he ordered huge amounts of blood panels and new X-rays of my hands and feet.

    On the day of the initial consult, the doctor came in and sat down, took a cursory look at my hands and feet, and said "You have serum negative RA, your X-rays already show signs of minor erosions in the joints."

    I was just shocked by how matter of fact he was, yet completely relieved. I didn't even have to go through my whole spiel about why I was there, because apparently the condition was so clear, my descriptions of what I was feeling were unnecessary.

    He went over my blood work with me, showing me they tested for multiple auto immune disorders, and inflammatory factors and viral or bacterial infections that can mimic auto immune symptoms.

    The inflammatory test, something called a SED, showed my levels at 5 times what they consider the high end of normal. This and the X-rays were the definitive proof I had an auto immune disorder.

    We talked about what I found most distressing of my symptoms, different approaches to try, pain management. He outlined what the initial treatment plan will be and reiterated if I felt I was not working for me, there are many other things to try.

    That visit was 3 weeks ago. He has put me on something called methotrexate, which he said will take 3-6 weeks before we see any measurable improvement, but it can help lessen the damage already done, as well as start to lower my discomfort and swelling. He also put me on oral steroids to help me now, as we wait to see how I deal with the treatment and if it will work of me.

    Mostly, after having now had 4 doses of methotrexate, I find upset tummy after consuming it and some slight vertigo are the main effects, but I still have 3 more doses before the next appointment. He did say it was not an overnight treatment, it could take weeks before we noticed a change in my symptoms.

    Still, I finally feel like I am making progress of some kind, that the is hope I will soon be feeling better. I guess most of all, I am just relieved.

    Thank you everyone for the support, I so appreciate it!!

     
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    Old 06-01-2014, 07:30 AM   #9
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    Re: Am I just being a hypochondriac?

    So glad to get your update, and know you are on treatment now that should help you. It sounds like you have a very good rheum that got to the point and will work well for controlling this. You may find splitting the dose of MTX may help with the nausea, like 1/2 in AM, 1/2 in PM of the same day, with food. The combo of MTX with Prednisone at first is perfect, since the Prednisone works right away while the MTX is building up.
    Glad you got answers and are getting help!

     
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