Who treats you for your Fibro?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by MsBrandywine, Nov 7, 2012.

  1. MsBrandywine

    MsBrandywine Member

    I have no one that really treats me.. I called myself to a Rheumy Dr .. that I saw a few yrs ago.. when I called back to get checked again.. She said she stopped seeing anyone with it? That they refer them back to their regular Dr.. has anyone had that happen..
  2. sunflowergirl

    sunflowergirl Active Member

    Read up on supplements.....this is a good place to research it......and try to do what is recommended.

    I saw new rheumatologists and about 5 doctors over the years including a holistic type doctor. No one has helped me. I'm now trying acupuncture and had my 7th session today.
  3. jaminhealth

    jaminhealth Well-Known Member

    I've had my 11th acupuncture session today.

    I'm not interested in the drugs pushed for FM, so its supps and alternative protocols...and ibuprofen..
  4. MsBrandywine

    MsBrandywine Member

    But thought perhaps could get her to maybe get me in for some physical therapy.. but . I do try to eat right and not just sit.. I try to keep busy.. But sometimes I wonder if there isn't anything else out there that isn't meds.. for I don't take meds anyways.. well not usually once in a while Ibuprofen..
  5. Beadlady

    Beadlady Member

    My primary care dr is an Advanced Registered Nurse Practioneer. She is really good and we have a good relationship. She takes the time to listen and has been awesome! The clinic I go to has one doctor and 6 NP and each one of them has a special interest and mine does Fibro and thyroid.

    I do take meds and a bunch of vitamins too and for the most part it works for me.
  6. MsBrandywine

    MsBrandywine Member

    So I know alot of people need them or take them.. Myself.. I just try to get by because I know the drugs all have side effects.. and that makes matters worse.. .. I stick to natural things too.. The only drugs I take.. are my synthroid.. which.. I did try one time to go without .. and that didn't work.. Had to get back on them.. I'm just thankful that is all I have to take with any kind of drugs..
    I am so super sensitive to meds and You name it so .. I just do warm showers.. heating pad.. if it gets really horrible I take some ibuprofen..

    Im glad that You have a good Nurse Practioner..

    Mine listens for the most part.. although a few wks ago.. I had a spot of my back.. Right away.. ( of course she is trying to do her job in her way)? but.. she set me up for a biopsy.. the few days later on a friday.. I woke up and for some reason after saying my prayers.. and thought.. I do not have to do this biopsy.. I need another opinion..

    so I called.. told the Nurse and she told me to call and cancel.. the biopsy and she give me a number and I called a Dermatologist and so went the next week ..and he looked at it and says.. What am I supposed to be looking for lol.. and so I told him.. he says leave it alone.. it isn't anything to bother with.. Unless when it gets inflammed or itches and gives me problems to come in and he would freeze it off? So.. I saved myself from having to go thru a biopsy.. that I did NOT need!.. So I do thouroughly believe in my heart.. To always,, Always.. get a 2nd opinion.. I don't trust Drs as it is.. so.. but.. Just because she tells me something or recommends something.. Does not mean I have to go thru with it.. I have that choice..
    Just as all of You..

    Oh.. I do take vitamins.. the D3.. B Complex and my Ester C..
  7. IanH

    IanH Active Member

    When I was first diagnosed I could hardly walk. Holding a fork hurt my hands so that I had to keep putting it down. Pain woke me throughout the night so much so I could no longer drive for fear of hypnotic trance. I could not sit for more than a few minutes before the pain was screeming at me. My cramps were so bad I could not stand up or I could not hold my arm out. etc.

    I needed medication to help me cope and it did help me until I could start walking better and exercising better. That took 5 years. Then I discovered magnesium and that stopped the cramps and I managed to switch from amitryptiline to an opiate. Later I discovered that EPA/DHA helped reduce inflammation and that reduced pain even further. I then started on creatine, taurine, ribose and vitamin D to help my muscle strength. All along trying to build my exercise. One year ago I created a mix of supplements for mitochondrial support and glutathione replenishment based on the work of RichVanK and on the work of many mitochondrial studies. This made a huge difference and since then I have taken no painkillers at all and have raised my exercise levels to a "normal" level. I have recently dropped the dose of supplements I take.

    One important thing I have discovered. It is very important to build exercise, particularly exercises which are fast and intense rather than the usual strengthening exercises. This is to increase neural signalling to the muscles. To begin with these exercises are hardly sustainable but eventually they can be done. If we continue to act slowly our neuro-muscular system will deteriorate.
    [This Message was Edited on 11/09/2012]
  8. MicheleK

    MicheleK Moderator

    My primary care doctor takes care of my FM. I go to an ME, CFS specialist for the ME and then she follows what he does with me and backs him up.

    So many new things are being learned about FM, and there are a lot of Rheumatologists dropping FM patients. Right now the illness is thought to fall somewhere between patients needing a Rheume or a neurologist. But a good primary care doctor can do for patients, all that can be done, which is to prescribe medications, physical therapy, diet changes and exercise programs.

    Having these conditions is sort of like becoming a "hot potato" that everyone wants to keep tossing to someone else.
  9. mbofov

    mbofov Member

    If you are going to see a doctor, I strongly recommend you look for an integrative medicine doctor. They are knowledgable in both traditional medicine and "alternative" - e.g., nutrition! and supplements, etc. which most regular docs don't look at.

    A good website to find one is acam.org - they have a search feature near the top (health resources) to find an integrative med doctor in your area.

    From my experience and what I see on this board, traditional doctors usually just hand out drugs without getting at the cause of problems. ANd the drugs themselves end up causing a whole new class of problems.

    Of course sometimes they are necessary but very often not.

    Mary
  10. jaminhealth

    jaminhealth Well-Known Member

    got me thinking, when I first dx'd in 1999 (emotional trauma), my pain stuff was NOTHING like it is now....so perhaps the years of grapeseed ex did help me there....

    But, since hip replacement surgery 2010 (physical & emotional trauma), everything has been magnified and worse....so that trauma didn't help things at all for me...the only pain I don't have NOW is groin pain....

    For me it appears to be TRAUMAS that have messed me up.

    No infections, etc...I'm not sick, just in mega pain issues.
    [This Message was Edited on 11/10/2012]
  11. PITATOO

    PITATOO Member

    I've been to many health care professionals. My PCP seems to be the best for me. Been going to him for 20 years, know my body quite well. Knows when I am in pain and knows when I need adjustments. He is not quick to make adjustments. Not fibro related but I have high cholesterol no reall but 170+- HDL 29 low for a man. Wants me again to try a statin. Nope I said, I am on testosterone and know that will eventually help it. It is from my starchy diet. Which I eat more startches when I don't get enough sleep and am in more pain. Plus if I get different muslce pain who is to say what caused it the statin or the fibro. I start on BUTRANS tomorrow. Been on ultram for 17 years. Hoping this help better, enough to get me off my butt to at least exercise a bit. I am only about 20 lbs overweight but feel better right at 205-212 I am a 6' 3" male who will be 50 next year. My PCP is willing to trying anything within reasons. Then for therapy is see my massage therapist once a week. Yes it is expensive but it allows me to keep working. And I want to work as long as I can. Even if I live to be 100. Thank God I am a computer consultant and not a manual laborer person. But sitting all day really hurts after a while. I have a really good employer and will be working from home until sometime next year. Then may be on the road for a few months and then back home for next summer. Plus my PCP will check different tests for me if I as, like Estrodial to make sure my supplmented testosterone is not turning into Estrogen, which it is not. but gotta keep an eye on that.

    I guess find someone that keep be a part of your life plan and hopeuflly he or she will see you through most of it.

    TTFN - Bobby
  12. Mikie

    Mikie Moderator

    Is a doctor of physical medicine, a physiatrist (not a psychiatrist :) He does sports medicine and has become a bit of an expert on CFIDS/ME and FMS. He helped me sooooo much. He is in Ft. Myers, FL.

    My current PCP, Dr. David Gomeringer, is the one who did my peptide injections which have sent my symptoms, including Sjogren's, packing. I believe his IQ is in, or near, genius level. He also practices in Ft. Myers. Dr. Gomeringer is in Family Practice.

    There is nothing showy nor pretentious about either of these doctors' practices. There has never been any "attitude on the docs' part and not on the part of the people in the offices. These are humble and caring docs.

    For anyone looking for the peptide injections, now called, amino acid solution injections by the FDA, I recommend Dr. Gomeringer.

    For anyone looking for a more general approach to our illnesses, I recommend Dr. Galang. He listens and is always open to patient imput.

    Love, Mikie
  13. sunflowergirl

    sunflowergirl Active Member

    I've gotten absolutely NOTHING from the doctors I've seen. I went to that website and found one about l0 miles from me so I've got an appt. on the 30th. I'm really praying she can put me on the right path.
  14. luigi21

    luigi21 Member

    yes this is common, its because rheumatologists cannot do anything different to your own doctor, ie prescribe medication or physiotherapy hydro etc. sometimes people get bounced from rheumy to neuro, to psychotherapy back to doctor. theres always been a debate about who should be treating us, but they are now making it our doctors because the condition can only be 'managed.'
    that said if you get any different symptoms like swelling of the joints, or immobility you should be referred back to rheumy as this may be a different condition other than fibro.
    all the best