Overwhelmed by FM

Discussion in 'Fibromyalgia Main Forum' started by Si Titran, Jan 20, 2010.

  1. Si Titran

    Si Titran New Member

    I'm totally overwhelmed at this point. I don't even know where to start. I was fortunate that after my first deep flare up that kept me out of work, on medication and on the sofa for a week a rheumatologist I just started seeing for knee troubles made a diagnosis of FM for my pain. I didn't go through years of doctor's not knowing what was going on.

    I think part of the problem is that i was 20 at the time, and I was too young still to know how on earth to be proactive about my health. Especially since the doctor didn't offer any information about FM, nor any treatment. He basically told me that I should sleep better.
    Now that I'm 26, unemployed, and have no time constraints, I normally get over 6 hours of sleep. My symptoms have only worsened. I dread being awake because its just so hard. My family, whom I still live with, know that I have FM, but I don't think they understand it properly. My biological aunt has FM, as well as an aunt from marriage. My family seems to be very understanding to one, as she also has an aggressive form of Rheumatoid Arthritis in addition to diabetes and FM. But she is also twice my age. Lately day to day function does not exist. I even had to drop out of college because my symptoms, mixed with anxiety, made it just too hard. My family does not understand this at all. I get told that I'm lazy and a failure.

    Tonight I was talking with friends about a hobby we all enjoy together, but they are younger than me, and don't know anything about FM. I'm scared of what they will think if I were to tell them about it. I don't want pity or even sympathy. Just not judged for what i can and can't do. Because of the pain in my hands and arms, and just exhaustion of being alive, I find it hard to do the few things that still hold my interest. Even reading is hard because of the pain in my hands. Typing this now is work.

    I worry about staying this way forever, or even the next 20 years. With out insurance now, its impossible to get the care that the FM books all tell you to. But I can't work the way I am now. Unemployment is carrying me over for now, but I'm 26. I can't survive off of that for long.

    Do I have any hope?

  2. butterflydream

    butterflydream New Member

    Fibromyalgia is overwhelming. We need to continue to manage our symptoms.
    Many doctors have a very hard time understanding Fibromyalgia, continue to educate yourself with what may help ease your Fibromyalgia. Always have hope finding what may work for you.

    Being 26 as you are and having your friends is great, talking about hobbies you all enjoy together, enjoy it. Go for a swim with your friends. Water therapy is great for Fibromyalgia.
    If you're scared of your friends knowing you have Fibromyalgia, why tell them?
    It may be best to further yourself with more ways of living with Fibromyalgia , build self confidence, try to learn to manage symptoms that you are feeling.

    Jobs are hard to find and i realize you are on unemployment, alot of people are in this situation. I really hope you'll be able to find something you enjoy doing and continue to manage your symptoms best as you are able to. Always have hope.

  3. herbqueen

    herbqueen New Member

    You can get better!

    Have you tried diet changes i.e. no sugar, gluten free, no processed food or even a low carb no grain/sugar diet for a period to see if that helps? A low carb diet/no sugar cut my pain level in half....

    Are you taking espsom salt or sea salt etc baths?

    Eliminated all perfume, chemical body products- to all natural unscented.

    Exercise- stretching, water therapy, pace your self-keep you muscles in shape.

    Have you been tested for lyme disease?-

    Try Moducare Sterinol- that has helped many with RA, Lupus, Fibro etc.

    Think about trying LDN (low dose naltrexone)

    Make sure you are getting quality sleep.....

    You can get better!
  4. Si Titran

    Si Titran New Member

    i don't know about lime. When I had insurance I tried to get my dr. to test my thyroid, but no matter how many times I called I couldn't get a response. So I started to look for new doctors, but with the loss of my job, and a knee surgury RIGHT before my insurance cut off, put that to the side. Now I can't afford doctor visits, let alone testing or medications.

    I try to force myself to be active at the gym, doing LOW to NO impact things like the bike and swimming. Its hard too because I get severe headaches, that some times worsen with exertion, so those days its beyond me to do much of anything but pray I fall asleep.

    The diet is something very much to consider. I have hypoglycemia, and lately it's been almost out of control, so I've been very careful about everything I'm eating.

    I'm also fortunate to have a hot tub at my home. ( Thanks mom!) I will sit in there for long and short periods of time, but most of the time they make me more tired, and many times more stiff. I don't know if that's normal or not.

    Right now I'm in a cross-country relationship, and because of His own chronic illness and experiences with FM, he has been the only supportive person in my life, up until now. Previous relationships did not work out because of my condition, and their supposed understanding of FM. I worry that it will happen again.

    Thanks for trying to help!
  5. sickchic

    sickchic New Member

    Hello Crystal

    You should go to the public health and apply for Health Ins, or see if your city has low income health care. That is where I started out with medical care for my FMS.
    This is a great place to learn and get support.

    Good luck to you .
  6. Nanie46

    Nanie46 Moderator


    FM is a set of symptoms that Dr's diagnose you with when they do not want to look for the CAUSE of your symptoms.

    I had a FM diagnosis for 21 years before finding out that the CAUSE of my symptoms was a chronic borrelia burgdorferi infection (lyme).

    The same thing has happened to many other people with FM or CFS diagnosis, along with Rheumatoid Arthritis, Lupus, etc.

    99% of Dr's do not understand how to recognize, diagnose or treat chronic lyme.

    Many chronic lyme patients also have other tick borne disease too, like Babesia, Bartonella and Ehrlichia.

    FM can look like it runs in families. If the cause is really the bacteria borrelia burgdorferi, many people in the same family can easily be exposed to ticks because of living in the same geographic area.

    Lyme can also be transmitted from mother to fetus through the placenta and through breastfeeding.

    Lyme can lie dormant and then any stressor can activate the infection.

    The more infections you have, the more symptoms you have and the more sick you generally are.

    You are describing some very classic lyme symptoms.

    You should consider getting a western blot IgG and IgM from Igenex lab in CA...test #188 and #189.


    Please read the symptom list on pages 9-11 of this Lyme expert's paper...


    Also read the coinfection symptom info on pages 22-27 of that paper.

    Now the problem with lyme testing is that is is not real accurate. Many people with lyme have only had negative tests.

    Lyme is a clinical diagnosis and should NEVER, NEVER be ruled out with just a negative lab test.

    Many Dr's mistakely rule lyme out with a negative lab test leaving people undiagnosed and suffering for years.

    It really takes a Lyme Literate MD (LLMD) to properly evaluate, diagnose and treat chronic lyme and related coinfections.

    Here are more very helpful links......




    You are too young to suffer like this. I wish I had this information many years ago.

    Please do not discount it. It is very, very possible that you have chronic lyme and other coinfections.

    There is a very active and good Medical Questions board at lymenet.org. There is also a Seeking a Doctor board.

    There is a lyme board here too.

    Let me know if I can help you.

    All the best to you.
  7. loto

    loto Member

    Yes, there is hope. Even though we don't think so, there is always hope. I have been way down in a low mood for weeks now too. Last night I had about 10 minutes of thinking of ending everything. I hated feeling that way. I just wanted to stop "feeling" everything!
    I don't know if you're on any medications: you mentioned you don't have any insurance, which is not good for people with our diagnoses. Is there any way to get state medical insurance? I understand so much how you are feeling, but please, let's help each other by supporting each other and telling each other there is hope, and we need to go on, somehow. We are here for some reason, whether we know why or not. (Personally, I have been wondering why I have to deal with all this crap, and question God, and get frustrated, but then turn around and tell myself that He is with me, and there's some reason why I am what I am).
    Sorry if I'm rambling on and not making sense, sometimes I have trouble saying what I mean.

    Just hang in there Crystal, we're here, and you do have HOPE! You are special, and you will get the relief you need.
  8. AuntTammie

    AuntTammie New Member

    You said, "I'm also fortunate to have a hot tub at my home. ( Thanks mom!) I will sit in there for long and short periods of time, but most of the time they make me more tired, and many times more stiff. I don't know if that's normal or not."

    I just wanted to tell you that I have the same problem......I don't have a hot tub at home, but have used one at a fitness ctr and while I am in it it feels wonderful (if I don't overheat), but when I get out I feel very faint and have actually passed out (due to POTS).....I also feel more tired, and a little while afterward, I feel much more stiff and sore.....have realized that I have to resist the temptation of using it, bc ultimately it hurts more than it helps
  9. gmg44

    gmg44 New Member

    Hi Crystal, My name is Glenda from Texas. My heart goes out to you and I certainly can relate to the way you feel. I was involved in a rear- end car crash when I was in my mid 20"s and was told I just had a minor whip lash. That was around 1970. I suffered with the pain in my neck and then hips till 1990. During this time I owned and operated a hair salon and had a family with 2 children. So many night I would cry myself to sleep from the pain. I was finally diagonesed by a nerologist as F.M. and 2 other similiar ailments. She sent me to a rumotologisty (spelled wrong) in Shreveport, La., that told me it was just all in my head!!! You have to remember , this was about the time they were recognizing F.M. as an illness. I flip/ floped back and forth with Drs. till I found a G.P. that knew what it was and started treating me. He said we HAD to start with meds. to help me go into a deep sleep, and then meds. for the pain. I had a lot of other med. problems also, but I ended up on Oxicondin, when I finally went out on disability in 2002. So many people at the support groups I attended told me ' YOU CAN'T GET S.S. on F.M.. That is wrong , I did and it was the first time I applied.
    Through the years I found moist heat helped me more than anything. Have you heard of "bed buddys" ? You can buy them at WalGreens Drug. You heat them in the microwave . I also educated my husband on F.M. I took him with me to simanarys with me, so he could hear the different Dr's. tell ways of coping with F.M
    Now, I am trying to cope with Fibro-fog!! A Dr. told me monday I need to be tested for demenaty!! That is why I am on this web site now to look up Fibro fog. I read to my husband tonight that f.f. is NOT dementa or alltimers and it explained why.
    I know it is discouraging, but hang in there with a pOSITIVE attitude, that you can fight this! Get educated on F.M. YOU ARE NOT ALONE!! Glenda