Hello, new

Discussion in 'Fibromyalgia Main Forum' started by pandaeye, Nov 4, 2006.

  1. pandaeye

    pandaeye New Member

    I am having huge trouble in getting my doctor to take me and my symptoms seriously and am hoping to get some advice from everyone here. For the past few months I have felt unwell. It started with shoulder blade and chest pain and my doctor thought I was possibly experiencing gall bladder issues. This has been ruled out. I suffer with aching shoulders, arms, legs and tingling and tender points. I also sweat and have IBS and generally feel unwell most of the time/fatigued. My doctor has put all of this down to stress and anxiety. I completely disagree - in fact if anything the only reason I am stressed is because I am in pain so often. The doc claims my symptoms are vague and he can only treat something specific. What can I do?
  2. NyroFan

    NyroFan New Member

    pandaeye:

    Many of us have had the same trouble when first diagnosed.

    My suggestion: many times a good rheumatologist will treat people like us. It may be worth the time.

    And yes, we have to be proactive. Always get the best medical care as possible.

    I had five doctors until my rheumatologist helped me.

    Welcome to the group!!

    nyrofan

  3. Granniluvsu

    Granniluvsu Well-Known Member

    Pandaeye,

    Welcome to this group. There is so much information and friendly people tht can help you and give you suppofrt.

    Believe me, I understand what you ae going through. It only took me over 20 years to get dxed but that was before they knew anything or very little about CFS and Fibromyalgia.

    First of all, I suggest that you get your thyroid checked and have an a arthritis blood test done, if you haven't already. I went first to an endocrinologist and she helped me get my thyroid and osteoporosis in order should I say. I was going a long time with a supposed normal thyroid when I was really hypothyroid. Many times a dr. esp a pcp will just go by your TSH level . Also, now they have different range numbers that they go by and not the old ones. Sometimes, thyroid meds help with some of the pain and the symptoms. It probably helped me a little bit but I still had symptoms so I shopped around for a Rheumatologist that would take and diagnose FM. Some rheumatologists will not take FM patients or want to be bothered for some reason.

    ANY TESTS THAT YOU HAVE PLEASE GET COPIES FROM YOUR OLD DR. TO BRING TO YOUR NEW ONE, WHEN YOU GO. Then the doc will have more of an idea of what is going on and if the labs are recent enough he/she may not have to redue them. Also keep copes for yourself.

    Before going to the doctor (Rheumy) please ask the office over the phone if she/he treats and diagnoses CFS/FM patients. If so,make an appointment and then bring the copies with you to show the doctor. Also, be ready to give her/him a good history - when it started with what symsptoms, etc how long you have had these symptoms, etc.

    With my history (I was dxed with Ebstein Barr Virus Syndromw which was thought to possibly be one of the causes so tht helped me . She looked at my labs, checked my tenderpoints somewhat and talked about them and about what meds I had been on, etc if any and I was dxed on the first visit. Then she started me on some meds to try and help me sleep which helps alot I think. I was dxed with CFS, FM and Chronic Myofascial Pain which is what I have alot of. I have also alog ot neck, shoulder ad fascial pain which I was told about first from another FM board member.

    Try and do your homework first if you haven't already, as I said with the labs and history and calling rheumatologists offices first. There were not many in our area and few that would work with FM patients. However, I had gotten one name from my PCP , then I talked to other dr's office to make sure I wasn't going to waste my time and money.

    I had just given up after years and then finally started working on really trying to find a dr. to help the last part of last year.. It might take you awhile to do this. I had given up after trying years ago.
    Hope his help you some. Againwelcome to this board and all the friendly people.

    Keep in touch and let me/us know how you are doing. It has taken many of us a LONG time to get a dx. You are NOT along.

    Warm hugs and blessings,

    That Granni (Marilyn)

  4. pandaeye

    pandaeye New Member

    Thank you for your replies. My doctor has only run a full blood count a few months ago which showed unexplained anaemia, he prescribed me iron tablets and cocodomol for my pain and sent me on my merry way. Since then Ive been back and back basically every week with aches, pains, stomach pain bowel issues all of which he is putting down to anxiety. Do I have to ask him for a referral to a rheumatologist or is this something I could enquire about myself? The thing is he isnt taking me seriously at all, and If I have to go back to him one more time its going to end with me getting really angry. Thank you for the tips on a chiropractor and massage, those are things I will definitely be looking in to.
  5. Granniluvsu

    Granniluvsu Well-Known Member

    Pandeye,

    It depends on your age and insurance if you are on medicare or not. I am guessing that you are not on Medicare yet, in which case you can not go anywhere without a referral. Some insurances do need a referral.Mine did before I got on medicare. Most good dr's will give you a referral to an endrinologist or rheumatologist, if only to rule out things. Please ASK!!

    If your dr. does not give you one would go and chance doctor (PCP's) and find one who will. You will have to check your insurane I believe to see if you need to get a referral to go to another dr and get it paid for.

    Do you know if your doctor did a thyroid panel on you, if not ask for one. If he refuses to do anything more for you go to another doctor. Iknow it is a royal pain in the ___ but some of these doc just do not know anything about CFS/FM etc or they do not want to be bothered.

    MANY HERE HAVE GO TO MANY DOCS OF BEFORE FINDING ONE WHO WOULD HELP. Make some phone calls, to your doctor and then to others if you need to. Not sure if it would be best for you to start with an endocrinologist or a Rheumatologist. I had to go to both of them.

    Years ago I had lots of IBS symptoms but not so much any more, and still have the sweats but not as much. I still have some menopausaal symptoms.

    Let your fingers do the walking and make some phone calls to your doc and then to others if you need to and some specialist.

    Hope this has been at least some help to you .

    Lots hugs,

    Marilyn (that granni)
  6. charlenef

    charlenef New Member

    i ask this question of anyone that is anemia have you had it for long? i only ask because i have thalassmia anemia it is something that your born with it shows up in regular blood tests as lacking iron. most people that get it are italian or from around that area of the world.i also think that is linked to fibro and chronic myofascial pain that is why i ask. google them if you want this sounds like you have cmp to me if you can catch it now before it goes to your legs youll be better off. again welcome charlene
  7. lptopcat

    lptopcat New Member

    Sorry to hear you are having trouble with Docs. Seems almost to be the norm for those of us with this DD.

    Your symptoms are alot like mine. Please try to find a Rheumy, mine had been pretty great.

    (((hugs))) to you & keep posting & reading, lots of info & nice people here.

    Theresa
  8. kriket

    kriket New Member



    I also agree that you need to go see a rhematologist and see if he can help you out.


    Kriket
  9. shar6710

    shar6710 New Member

    Welcome! Doesn't sound to me like your dr is being very thorough if that's all he's done.

    Anemia isn't caused by stress. You should research possible causes for anemia on the internet if you can.

    Also, you don't say how old you are but if you are, shall we say mature, I would request a stool sample. If you are young this probably isn't neccesary.

    My FIL had "unexplained" anemia, got a second opinion and turned out to have early colon cancer. He's fine now.

    Good Luck
    Shar
  10. bmadan

    bmadan New Member

    Pandaeye,

    Hello, I am new too and this board seems to be full of great people with great advice. This year has been frustrating trying to find a good rheumatologist or any doctor for that matter that can help diagnois me.

    I have IBS like symptoms and had to go to an gastrologist (sorry for the spelling) for a colonoscopy and endoscopy. They find I have ulcerative colitis and mulitple ulcers in my stomach. I am told that having IBS is common with Fibromyalgia.

    My internal medicine doctor is the one facilitating my care and he is sending me to all sorts of doctors. One of the most important things in my opinions is finding a great doctor that understands what you are going thru.

    I wish you luck in your search for a new doctor. I am here for you if you need to "talk".

    Barbara
  11. bmadan

    bmadan New Member

    Sorry, my whole point was that when they started running all sorts of blood work on me, everything always came out normal. Except at first, I had mild anemia and my B-12 level was a little low.

    My internal med dr. had me take 325 mg of iron, a B-12 vitamin daily and about a month later my anemia was gone and this was around the same time the gastrologist put me on meds for the colitis. They felt somehow the two were related.

    Barbara
  12. rockgor

    rockgor Well-Known Member

    Welcome to the board. As you see, there are lots of nice people who can give you info, share experiences, etc.

    You can do research or search for a doctor by clicking on the appropriate area at the top of the page.