first timer looking for some advise

Discussion in 'Fibromyalgia Main Forum' started by jesyka, Nov 15, 2006.

  1. jesyka

    jesyka New Member

    Is that even how you spell it? Either way I have gotten to the point that I have gotten copies of all of my medical records and am doing my medical research myself to try to figure out what is wrong with me. To sum it up I am 28 and always exhausted and have been tested an unknown amount of times for chronic fatigue, hypothyroid, diabetes, and all sorts of other things. I can sleep for 2 hours or 12 and I am never rested. I have put 40 pounds on in 4 months-same diet and amount of physical activity. I have chronic back, neck and shoulder pain, chronic pelvic pain and digestive issues. I have been told I have IBS and they want to do a laporoscopy for endometriosis. I had a miscarriage 4 years ago. I have restless leg about 4 nights a week, migranes about once a week, and acid reflux. My inability to concentrate and remember things has been blamed on anxiety. I wake up frequently sweating. I have TMJ and a weird rash on my hands and feet that look like really small blisters.
    I think that about sums it up. I am tired of feeing like crap everyday all the time and I feel like I am not being taken seriously. I know something is wrong....I need advise. Badly. Can anyone help?
    [This Message was Edited on 11/15/2006]
  2. butterfly83

    butterfly83 New Member

    Well.. obviously something IS wrong, because it's not normal to feel that way. So, let's just settle on that fact that something isn't right, just they haven't been able to give you a name yet.

    You have a long list of symptoms, but most fibromyalgia patients do. A long list of strange symptoms that don't seem to have any rhyme or reason to them.

    If I were to give some advice.. I would do a search in your area for a pain management doctor with experience treating fibromyalgia, and go get a work up. The first step would be to get your pain under control, which will help your mind clear and your sleep to be more comfortable.

    Unfortunately, fibro is such a complicated illness, we have to take one symptom and one step at a time. Try not to over stress yourself with searching. I do that too, and I know it can do me more harm then good sometimes. I have to work really hard to balance myself, because I want so much to feel better.

    So to start at step one.. find a good doctor! Pain management doctors have been the most willing to help in my experience. You can search here for recommended doctors in your state/area. This is a great place for tons of information.
  3. KarenZee

    KarenZee New Member

    Have you considered setting up a consultation with a naturopathic doctor? They are very thorough and usually get to the bottom of things. I know lots of insurance don't cover their fees, but maybe it's worth it to you to pay out of pocket.
    Good luck with feeling better.
    I know what you mean about your family. Everytime I complain about something, my husband says, "what is it today???"
  4. zenouchy

    zenouchy Member

    Jesyka,

    Welcome, I see you are brand new! Glad you found us. If you reword your post and say you are a brand new member, you might get even more responses- people love welcoming new folks. I'm so sorry that you are feeling so badly and even worse, not getting any validation from your family. ((((((BIG HUGS)))))

    Many of us can relate to feeling horrible and lack of understanding from family. It takes a lot of time for family to begin to understand what's wrong because they can't see it and the symptoms aren't life-threatening and vague. It's SO FRUSTRATING.

    Fibro symptoms are so elusive, and also, you might have other things going on too. I wish I could tell you what you have and make it all go away. While ALL your symptoms need examining, I was thinking about your rapid weight gain. It COULD be a thyroid issue, but could also be something else.

    *You DEFINITELY need to find a good doc or set of docs! There is a link under the community tab towards the right hand side that says "DOCTORS" where people have listed doctors that they like who treat fibromyalgia. That might be a start if you haven't had luck finding a good doctor. You can also post to the board and ask people for recommendations. (Also, when you get a chance, it also might help to fill out your profile so people can learn a little more about you so they can help you even better.)

    Finding the right doc(s) will put your mind at ease so you don't have to do the guess work of researching, which sometimes can be misleading. I hope it works out! Let us know how it goes and a warm welcome again to the board!!

    Warm hugs, Erika
    [This Message was Edited on 11/15/2006]
  5. jesyka

    jesyka New Member

    i appreciate the advise (and i did update my post title) and i also appreciate the kind words...i have an appointment w/my primary care phys. on monday and i will be bringing all the info i can and finally be seeing what he thinks re: fibromyalgia....and i am considering finding a new doctor...someone a little more opened minded who doesn't make me do all the research ..... i never even considered the possibility of fm until i was at a bookstore researching endometriosis and the book next to the one i was reading was about fm....i don't even know why i picked it up never mind read it but i'm glad i did... i will definately be in touch to let you know how it goes. thanks again
  6. tandy

    tandy New Member


    I have all the fun stuff you mentioned.
    Endometriosis ,Fibro,and all the achey body parts,IBS,...never feeling rested wether I sleep 3 hrs or 12hrs.
    I could have wrote your post!

    I was DX at 32 yrs old and I'm almost 44 now.
    Its been a long 12 yrs let me tell ya. :)

    I'm glad your here and hope you get some answers soon~
    BTW: Endo seems to be more prevalent when you have Fibro.
    best of luck hun~
    Tandy

  7. Gosia

    Gosia New Member

    Hi Jesyka.

    I came to this board about 6 months ago. I learned so much every day from other peaple like us. I did so many tests to find out what is wrong and I'm still not done. Process of elimination.You need to see if you have Lime, Candida, sleep, neurotransmitters, autonomic, viruses or bacterial issues. You find all the answers for your questions on this bord.

    Wish you good luck. Gosia
  8. deliarose

    deliarose New Member

    that you should probably get a sleep study.

    I think your doc needs to order a bunch of tests so you can start eliminating diagnoses until you start to get a handle on whatever it is.

    Clearly you have pain, sleep and bowel issues (at a minimum), so you should get a sleep study and I would also reccommend seeing an alternative practitioner who might run a comprehensive stool analysis to see what kind of germs you have in your gut. (IBS)

    If your illness had any kind of viral onset (ie it was triggered by a virus) or if you feel it could be fibromyalgia, I would also ask your doc to order the CFS panel of tests offered by Immunosciences Lab in LA.

    I wasted years (almost a decade) seeing docs for my CFS. They pushed a ridiculous amount of medication drugs on me,.. with nothing to show for it.

    I am currently treating a stealth virus with transfer factor and glutathione, after finally finding a specialist who understands how to treat this illness.

    It's very important that you pick the right doctors. Be proactive. If you suspect it's hypothyroid, see an endocrinologist or at least ask for a referral.

    I'm not a fan of the Fibro and Fatigue Clinics, but if you do have fibro or CFS, they do ..at teh v. least... do some aggressive testing up front.. whioh might save you years of anguish.

    Good luck
    delia
  9. NyroFan

    NyroFan New Member

    jesyka:


    Why not try a rhematologist? They (or most of them) know a little more about fibromyalgia than other people. Also, CFS.

    That doctor might check the trigger points on and in the body.

    That is just one suggestion.

    You feel better soon!!!

    nyrofan
  10. jesyka

    jesyka New Member

    first thank you to everyone who has taken the time to respond to my post.....all of the information and suggestions have been really helpful...

    i have a dr. appt today to finally discuss fm with my doctor...i am going in armed w/all kinds of information that i have found and just to make sure he absorbs what i am telling him i have highlighted the symptoms i have and am bringing with that the copies of my medical records that back it up....should be interesting...i will let you all know how it goes...

    thanks again :eek:)