New to Fibro-need help to understand it.

Discussion in 'Fibromyalgia Main Forum' started by lorna99, Mar 1, 2006.

  1. lorna99

    lorna99 New Member

    My Docter knows little about this disease and says I have it but alot of Docters don't believe it exists.
    What type of docter should I see.
    If I understand it there is no medicine to take except tynelol which I take too much and alot of witamins and antidepression med.
    My symptons irratable bowel-sleep apnea-high blood pressure-depression-body ache all over-unable to get out of bed days on end.
    Is this it in a nut shell .
    How do you get through the bad days.
  2. cosmoo

    cosmoo New Member

    Lorna99,
    Well there is much I could say but I will keep this brief. You have come to a good place for information. Concerning DR.s most people with FM are treated by Rhumatologist-it falls into their speciality of muscle-skeletal disorders. That said it is vitally important you find one who regulary treats FM patients as part of their practice. The best way to do this is either call around and ask their offices or find a support group for FM in your area and ask a few of the people in it who they see and who they think is the best. Start with a Rhumy but you can also consider adding a pain Dr. in the future. Make sure both are working together.

    There are many different types of medicine you can take and supplements that do help alot with the pain. It may be a full year of trail and error before you find what works for you. Nothing ever takes it completely away but you can get relief with many of the meds. A good Rhumatologist can advise you on where to start.

    Because like you many of us you have more than one thing going on, and all related and common to FM it would be wise not to self medicate or start taking a bunch of supplements with out a clear plan from a DR first. Many "natural" things interact badly with meds. and each other.

    Some of us, myself included found cognitive behavioral treatment with a trained Psychologist helpful for getting thru the worst times.

    Your best resource is good books(, listing of somefound here by typing in books at the top), your computer to research meds and treatment, others with FM.
    This is a good place to start.

    Best wishes to you.
  3. Hope4Sofia

    Hope4Sofia New Member

    I'm sorry you even have to ask but welcome. You will find a lot of info here. I'm fairly new to the board as well but have been here long enough to know how great these people are.

    As far as docs to see. Rheumatologists are very good for diagnosing and can help w/ tx. Pain clinics can also be helpful. A lot of people here have gone to FFC (I think it stands for Fibro Fatigue Clinic??? - someone else might help with that one). I also go to a great naturopathic dr. Whoever you see you need to ask if they have a lot of experience w/ FMS before you even schedule the appt.

    As far as meds. That's a huge topic. There are so many directions you can go with that. If you haven't started any meds yet then you're kind of in a good spot. But get GOOD council from an educated doc.

    I would say stay away from narcotics if you haven't started them because studies seem to show that overall they don't improve the FMS condition (though they may make it more bearable for a time). I have read that anti-inflamatories have a better overall effect on pain.

    Sleep aids are a big one with all of us. I personally take Trazadone (a tricyclic anti-depressant that works better as a sleep aid). It's a good one because it has low side effects and actually induces restorative sleep which is what most of us are lacking.

    My current strategy is to do as much as I can through natural remedies. I am getting chiropractic care and acupuncture twice a week and I have started making major diet and lifestyle changes. I am treating myself for Candida with probiotic therapy (you can read about it by doing a search at the top of the message board). I am also managing my hypoglycemia. I have just started some serious vitamin supplementation (B-complex, E, Co-Enzyme Q, magnesium, etc.)

    You can get a lot of info by doing searches at the top.

    I hope you find this helpful. Glad to meet you.

    Sofi
  4. lovethesun

    lovethesun New Member

    Glad to have you Lorna99.Linda
  5. marw

    marw New Member

    Just want to put in a word for those of us who DO NEED NARCOTICS! For years I took anti-inflamatories, but bac then I was mostly in remission a lot and didn't even know I was sick....just had some aches occasionally. After I got really sick, I needed an opiate med to relieve the pain, or I can't function. There are quite a few of us like that. On the other hand, you may be O.K. if you can take anti-depressents. I can't take them myself because of too many side-effects.

    For docs, yes you go to a Rheumatologist. THey diagnose it, so you know for sure if that it what it is. For pain, I find a good Pain doc or even an Internal med doc---any doc who is sympathetic to Fibro and knows about it---is good. Not all Rheumatolofists are sympathethitc to it, even though they supposedly treat it.

    Wishing you the best, and sorry you have this thing! Let us know how you are doing. YOu will also find lots of good info on this site!

    Margaret
  6. rachel432

    rachel432 New Member

    first of all i have found this board to be a lifsaver. i was just siagnosed in december, and the infomation i have found here really helps me get through the worst days. just having understanding people who will listen to you is a wonderful thin when things get really bad.
    as far as doctors good, i have had very good luck with an understnding internest who willing to expeiment and a psych. i haven't even though about a rhuemetologist or a pain specialist yet. but, i'm sure i will in the near future.
    i hope this helps.
    rachel
  7. Musica

    Musica New Member

    I'm glad you found this board. It is so important to have a source of support, understanding and information!

    It has been mentioned already, but let me stress the importance of finding a rheumatologist who BELIEVES IN AND TREATS fibromyalgia. Sadly, many of them don't recognize FMS as a real diagnosis, even though that specialty is the one primarily "responsible" for treating FMS. Definitely call around and find one who actively treats FMS, and preferrably one who specializes in it.

    Nothing works for everyone, but tramadol is said to be one of the pain meds that helps many FMS patients. It is an opioid, but non-addictive. I take it and it helps, for the most part.

    Good luck on this journey.
  8. jakeg

    jakeg New Member

    You need to find a good rhuemy as others have stated and also a pain manegment doc. I'm one of the people that need to use the narcotics.

    I have tried a ton of the non-narcotic pain meds and anti inflamitories with no releive at all. So if you do happen to fall into this catagory I wouldn't be to concerned about it as long as you follow the script instructions you'll be Ok.

    I've been taken vicodin for months with no ill effects except that the effectiveness has weaned to a point that it was not working, so I spoke to my rhuemy about it and now am taking oxycodone and use the vicodins for break though. This combo seems to work for now.


    I hope that you are able to find a good doc without having to search like I did for a while.

    Jake
  9. welcome to the message board lorna99.you wont regret coming here.read through the posts at your leisure.i know we all have short term memory loss,and so id say..when you find something that interests you on the message board,print it out,and keep it in a safe place.then when you feel depressed and desperate for answers,read the messages that you printed out.i got all of my information from here as the doctors in my town know very little about fibromyalgia/chronic fatigue syndrome.and there are no support groups in my area where i could visit and chat with other sufferers.
    a reumatologist is the person you should see about your illness.thats the sort of person that told me i had the above illnesses.he said there isnt a cure as yet,and no pain meds that work.but i live in hope.
    as regards to how i personally get through the bad days,im not really sure.i just take one day at a time,and use a pain relieving gel that ive just become aware of,and it works in relieving the pain for quite a few hours,isnt that fantastic news.there are alot of posts on the message board were i and other members have wrote about how we try to avoid depression,and how we have found ways to help us with sleep and such.
    so welcome to the best support site on the net.


    take care
    love fran xx
  10. lorna99

    lorna99 New Member

    Boy have you helped me alot already.
    My Dr. said you got it-nobody to sent you too and no details of it. Alot of my problems with eyes -pain-tiredness-temperature etc. are related to Fibro.
    The big thing I now feel I am not alone and will take alot of your suggestions to see what works for me.
    I am taking too many vitamins etc. on my own and need help with that.
    Hope at last.