Is this type of pain really normal for fibro

[Dshell]

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

[gwcurt]

I don't have Fibromyalgia but have a neuro disease and I have found they share alot of similarities.  I've been down two days this week, down completely, but have had two acceptable days.  I've fought this for 10 years and it's still hard to get used to bad days. I have noticed that if I can do any exercise at all, it usually helps me, at least mood, often other pains. Took me years just to figure this out. I also take most supplements 3 times daily for fatigue and they do help me.  Doctors do not have the answers. In neuro diseases they can't do much for anyone, so they often seem to downplay and ignore. Same seems to be true with Rheumotologist diseases.  Steroids are all they have and they hate to use them because they can cause other problems.  We've all heard from all the people how good we look and why can't we do more, I have not answers for dealing with these people. Good luck. gwcurt

[supermomma531]

There is absolutely nothing wrong with you! You are what sounds like to be in a flare up right now and yes it could last a while. Everyone is different. But this doesn't mean that we shouldn't keep living our lives as full as possible! Only take one day at a time, and only do as much as your body can handle. One of these days, your body will settle down and then you'll have a period of feeling like your old self and able to complete tons of tasks! Be kind to yourself, I find that we are all too hard on our selves for something that can never be fixed especially over night. If you find that you are too sore to do anything, then leave it to the next day. Besides laundry and dishes aren't ever going to grow legs and walk off to get clean somewhere else! I have lots of days where I'm even lucky enough to be pull myself out of bed to go to the washroom and back to bed. When I have to fight to get through the day, I am constantly telling myself that I am doing it for the kids and they are worth all the pain the world no matter what! I make a list of chores to be done. If I can get one or two done in a day, this is a okay day and I just keep at plugging away at my chores for the rest of the week. I also work part time as a lunch aide in my daughter's school and more than half the time am dragging my behind just to get there. So please don't be hard on yourself. This is not something that will go away overnight. I find that we, ourselves are our hardest critics. We need to stop that. We also need to stop listening to others say really absurd things to us about something they know nothing about and don't have to live with on a daily basis. I also find that it really depends on the weather as to how I feel. The cold damp weather makes me ache because of the arthritis, but the warm air tends to make my muscles feel a bit better but I also get tired out quicker. So I have to pace myself all the time. Don't be afraid of getting more than one opinion by doctors. Not all doctors believe in fibromyalgia so they'll just sum things up to being in our heads or something that is truly off the charts and has nothing to do with what is really going on with us. Please feel free to contact me even if you just want to chat or vent. I don't get out much either. I try really hard to live my life to the fullest which is really hard having 3 children but they are worth all of the pain in the world, although sometimes I feel that they aren't when I am having one of my worst days. I've had to allow myself to lay back and relax when I feel I cannot do anymore. I know now that if I over do things on one day, I won't be any good to anyone the next few days. So I have had to learn to pace myself. Since learning this, I find that I'm not as stressed out or anxiety ridden. We are all here to support each other. So welcome to the community!