Hi everyone,
I usually post in the chronic pain forum but am happy to be here as I really need to hear from others with Fibro. I am 34 years old, single and was on a great career path until I had to quit, not knowing then I would be receiving a chronic diagnosis. I have been fighting with SSDI for two years as they cite my age, training and education (ugh double masters) as reasons for denial. SSDI's docs think I have possible SLE and I am frightened.
I received my Firbo diagnosis, from a rummy who told me to get over it and get a hobby, last June. He is the only Rummy in my town and UC Davis denied my referral for consult. I have been diagnosed with erythromelalgia, sleep apnea, asthma, insomnia, IBS, GERD, MPS, anxiety and depression. I have severe arthritis in both knees, neck and back. I have lost 70% of the cartilage in my L knee and my awkward gait is causing issues with my R leg which has decided to cramp in places like my feet, shin and hip. I have a rupture FJA and bone spur at C4-C5 and have received injections. Most recently my hands and feet are swollen and painful 24/7.
I have begun PT and have seen an osteopath once, whom I loved but am not sure I can afford. Doctors seem to be having fun giving me what I call "atom bombs" of medications. After nearly being hospitalized due to severe depression from Cymbalta my pain doc gave me Savella. He gave me the Savella while I was on an antibiotic and prednisone, so I had to wait to tease out what side effect was from what med. Not sure these doc understand with my anxiety I do not need any more norepinephrine. After a few months of terrible side effects I titrated up and then went through withdraws, again. I have three year sober tomorrow and have gone through many withdraws as docs increase and decrease benzos. I am vigilant about taking my meds as prescribed.
I am venting, what I really need to know is are others paralyzed in pain from their fibor? I cannot sit, stand or lay down. I cannot get comfortable. Sometimes a lay in bad and feel the pain from the top of my head down to my toes. I have been on a run for two weeks now with full body pain, along with my "injuries" and I cannot function. I did the dishes last nigh and was proud. I am pushing throug and getting out but I cannot seem to get this flare up? to back off.
I cannot do anything without my medication and for the first time in a long, long time I am having to take what is prescribed and sometimes that is not enough. I take multiple meds, norco @5x per day, Lyrica 2xday, xanax 3xday, prilosec, lexapro and the muscle relaxer tizanidine @4mg up to 5xday. Many of these are PRNs but I find I am only able to minimally function if I take the as prescribed (the full does). Which frightens me.
I suppose I feel alone. I tracked down a support group in my area only to find it closed. Friends and family "try" to be supportive but seen only able to cite this or that person they know, or know of, who has fibro and is working, walking 5miles a day ect. As if there is something wrong with me.
Any advice or support would be greatly appreciated.
My best,
Michelle