How do you accept this diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by newandangry, Jun 22, 2013.

  1. newandangry

    newandangry Member

    I have been dealing with this off and on for over a year and just now and really trying to come to grips with it after an official diagnosis of fibromyalgia. I am in tears everyday mourning the loss of what I thought my life would be. I am only 37 years old and a year away from finally finishing my PhD in ecology. I am not sure I will be able to finish at this point. My husband and I have loads of debt and I don't think I would qualify for any diability since I have never worked a higher paying jobs (did alot of internships and so forth before going back to school for my master's). I have two young children ages 4 and 6 and have barely been able to participate in their lives that past year. I just am so depressed on top of the aches and pains and nausea. I am already on Pristqu and Wellbutrin, but still can't get past feeling so hopeless. This flair I am having now is the worst one yet, I can barely walk. I just needed to vent to people who understand and ask for any tips on how to cope when you feel like your world is caving in?
  2. luigi21

    luigi21 Member

    Hi, I am 38, started suffering full blown fibro after an RTA at age 30, took two years to get a diagnonsense. I had trained for 3 years as Hollistic therapist, alot of hard work and study, only to be working for only a short period. For me it was impossible to practice my work as it increased my muscle spasms and i didnt have the stamina. Your right there is a grieving process with this condition. Have i accepted it? No. On the days i have accepted it i felt defeated and powerless. So i do battle with it, but of course i do get tired of it. Part of me is scared that ive forgotten what normal is. You learn techniques and ways to practically try and help yourself, the emotional part of having this condition is a whole ball game in of itself. Ive watched the life i planned for, to be wed and have had children pass me by. I was a horserider and all round sportsperson, no one would choose this life, i hate compromises every step of the way, but i have to keep up my routines like heat application, pain meds when i need them, and supplements we are deficient in, make my bed as comfortable as possible. you do feel your back to very basic living, but i hope that with science we are more knowledgable hopefully closer to a more reliable treatment better still a cure.

    Maybe some of the other people on the board can suggest help with finances, im in england so things operate differently, that said its still difficult to get what I think you call "social security."

    Stay in touch with those who have it and who you get along with. There are some wonderful people on this board, and who are keeping up with the latest developments in trying to find out the cause and ways to treat this condition, i still hold out for a hope for a cure.

    What you can do practically is have the tests done to rule out other conditions or ones that may contribute to this condition. Medical professionals say this condition is not progressive but for me there are consistants and there are fluating changes on the body parts it affects.

    I keep a diary to stay in touch with myself. You have got to learn to take care of yourself both physically and emotionally. Keep a calender to remind you of things use your alarm on your mobile too. i know its hard with the children my niece and nephews knew me as original Katherine, and i know there confused as to what has affected their aunty. Fortunately, children adapt better than us adults, they also grow up quickly and we fall out of favour as they create friends of their own age and we feel we're no longer worshipped like gods ;-)

    take care

    Katherine x
  3. mbofov

    mbofov Active Member

    I'm really sorry you got hit with FM. It makes perfect sense to be angry and what might help would be to channel that anger into working to get well. I've learned we have to do our own research, cannot rely on the doctors for this. e.g., the nausea you have could very well be a "side effect" of the pristiq. It's listed. It can also cause nervousness. These drugs are not benign substances.

    I would strongly urge you to find an integrative medicine doctor who will hopefully look at everything - your diet, your supplements, your hormones, vitamin D levels, meds, etc. etc. A good place to find one is, a website for IM doctors. Regular doctors all too often just hand out meds without getting to the causes of what's going on.

    And then read and research as to what has helped others - e.g., the guaifenesen protocol by Dr. St. Armand helped Mikie of this board a lot, got her off of heavy pain meds. Magnesium and malic acid can be helpful with pain and energy. One doctor was able to help her FM patient with green drinks - the patients had almost nothing but green drinks for several months and recovered.

    Your financial position is difficult and its especially hard with young children. This is why it's all the more important for you to take charge of your health and learn as much as you can.

    There are natural alternatives to prescription anti-depressants - 5-htp or l-tryptophan, amino acids which help the brain produce serotonin without the side effects of the drugs. But you shouldn't take these at the same time as an SSRI as you may develop serotonin syndrome, too much serotonin.

    Take care and keep us posted -

  4. mrstyedawg

    mrstyedawg Member

  5. newandangry

    newandangry Member

    Thank you so much everyone for your word of comfort and understanding. To add to the mess, I can't find a Dr. to really start treating me until I get better health insurance. The insurance i have now has a 3,000 dollar deductible before it even starts working.I will have slightly better insurance when the school year starts but it will still be rough. Secondly..I live out in the middle of no-where in South is very hard to find drs. that are open mined to treating fibromyalgia....I need to move elsewhere and get a better job with better insurance..but how does that all come togther when you have weeks where you can barely walk or get out of bed. Wow, its just so much to swallow. ANd do any of you go through periods of thinking this pain HAS to be tied to something else, I feel like I am dying, I HAVE to have som sort of cancer or deficiency or something that explains this...this can't be (what my doctor described) as "harmless,just painful"..ugh...
  6. newandangry

    newandangry Member

    oh, and I also have Type 1 diabetes and hashimots thyroidis to add to the mix...
  7. Mikie

    Mikie Moderator

    Dear Newandangry, I am so very sorry to hear what a rough time you are having with your FMS plus your other illnesses. FMS often hitches a ride on autoimmune illnesses. It is a good thing that you recognize that you are in the anger stage of grieving. We grieve for our old lives and what might have been just like anyone who loses something or someone. It is important to move past the anger stage, and any other stages of grieving. I know, I know--easier said than done. I was fortunate enough to have grief therapy available when I was first diagnosed. At that time, I was bedridden and on Morphine most of the time.

    As Mary mentioned, most of us have done our own research and found what works for us. This takes time but it's important for us to do what we are able to instead of just feeling as though we were blindsided out of the blue and are powerless to act. It won't be as easy for you because you don't have medical resources close by.

    Our members are some of the most generous and kind people I've had the privilege of knowing. They will help with any questions and pray for you if you want them too. Ask any questions and someone will try to answer. Finally, be as kind to yourself as you would be to someone else you love who is sick. Best of luck and, please, let us know how you are doing.

    Love, Mikie
  8. Vinkel

    Vinkel Member

    Dear Newandangry
    I am sorry that you are having a hard time coping with fibromyalgia.
    I am a new member and very happy that I joined the ProHealth forum, because I can now relate to other people having similar pain and frustrations I have.
    Stress often appears to trigger fibromyalgia and everyone with fibromyalgia is unique.
    I had a choice: Either give up or connect to the wonderful people on the forum who can give me advice.

    Now, with "hope" and "healing" in mind, please take some steps to get yourself back on track again.
  9. adamfr

    adamfr Member

    Wow so sorry to hear that at so young.