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Do you have remission'ish periods?
by clueless33, Feb 12, 2008 01:11AM
I was diagnosed with fibromyalgia last year and suffered miserably during the winter. This summer was better... except when we went on vacation and the ocean water was COLD! I felt better during the summer months, except the horrid fatigue. (I'm not sure if I have CFS - never have even researched.) I go from not feeling like getting out of bed to being fine. Sometimes my fine days are a month or more.
Do you experience triggers, like stress? I definitely have the weather trigger and I'm thinking stress as well. I had a death in my immediate family and have an immense measure of stress because I'm a contractual employee, and if I don't work, I don't get paid!
I beat myself up about pain meds - and worry about addiction... but I can tell you now, I'm a weenie and do NOT tolerate pain well. I also have anxiety and thyroid disease. I feel depressed these days. I am not sure if it is situational or what. I am overweight and know that if I could cut my weight, that would help as well.
I also feel like people look at me as a faker. People don't understand this disease - heck, I didn't understand it when I had friends with the problem. I hate my rheumatologist, but can't change to another doctor within the same practice due to the clinic rules. I also had a high RA factor (just a couple of points over) when tested the first few times. I haven't done the blood test since March because of insurance issues. (i.e. LOSS of insurance!)
I guess this is just kind of a meandering question and this is me... how do you guys deal? How do you handle other people? How do you get up and go? I'd love to hear other's stories, and the meds, dosages, therapies, exercise and so forth you recommend.
Thanks in advance!
Do you experience triggers, like stress? I definitely have the weather trigger and I'm thinking stress as well. I had a death in my immediate family and have an immense measure of stress because I'm a contractual employee, and if I don't work, I don't get paid!
I beat myself up about pain meds - and worry about addiction... but I can tell you now, I'm a weenie and do NOT tolerate pain well. I also have anxiety and thyroid disease. I feel depressed these days. I am not sure if it is situational or what. I am overweight and know that if I could cut my weight, that would help as well.
I also feel like people look at me as a faker. People don't understand this disease - heck, I didn't understand it when I had friends with the problem. I hate my rheumatologist, but can't change to another doctor within the same practice due to the clinic rules. I also had a high RA factor (just a couple of points over) when tested the first few times. I haven't done the blood test since March because of insurance issues. (i.e. LOSS of insurance!)
I guess this is just kind of a meandering question and this is me... how do you guys deal? How do you handle other people? How do you get up and go? I'd love to hear other's stories, and the meds, dosages, therapies, exercise and so forth you recommend.
Thanks in advance!
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Im not sure where to start in answering your questions, but here goes. I was dx 12 years ago and I now just take each day as it comes and try not to worry about the future.
I havn't been able to work for 7 years now, it drove me crazy at first and I wouldn't have been able to cope without my computer and sites like this one. Ive made some really good friends from other FM sites, Im new here though and hoping to make some more friends. I belong to a local FM support group although I dont get to the meetings very often because they are in the evenings and Im too tired to do anything by then. I do meet up with a few friends Ive made from that group though, we meet up once a week for lunch, we've got past the stage of talking about our illness now and just have a laugh, it keeps me sane (ish)
How do I cope with other people ? Well I only care about a few close friends and my familys opinion, they all know about FM so understand me. I dont care what anyone else thinks, If someone asks whats wrong with me as they often do as I walk with a stick, I tell them its a chronic all over pain and fatigue syndrome, a bit like ME but more painful, most people seem ok with that and like I said before, if their now I dont care.LOL
Im on alot of painmeds,, although Im not sure any of them work as Im still in pain, but Im worried that it will be worse if I stop taking them. I wouldnt worry about addiction, if you find something that helps, then stick to it. I also do a few gentle stretching exercises in the mornings and once a week I have a hydrotherapy session.
I have tried lots of therapies, they all seem to help for a bit, maybe 2 weeks, but then they seem to stop helping. At the moment Im having reflexology but only for relaxation, I get worse with stress so need to relax. Yes also the cold and damp makes me worse as well, roll on summer. LOL
Just let me know if Ive missed something out, or if you've got any more questions, I will try to answer them for you.
take care
it helped explain Fibro to him and now he is the greatest supporter. I have been in the medical profession and I too hate to take drug. I lost my husband 4 years ago and had the worse Fibro flare up ever! Everything from, reflux, IBS, no sleep, fatique, depression, anxiety, pain...
I found forcing myself to take a walk everyday, really helped. It got longer and longer.
Today..the bones hurt and I have swollen feet...I just push myself. Don't give in or you won't get up!
Take care, Lillie
and being cold, at all uncomfortable..
I have had 1 remission in the last 10 years, I awoke August 17th, 2006 NORMAL...the Pain/ Fatigue Free days lasted for 6 wonderful days, my Husband and I thought it was Over...my Husband actually had tears in his eyes, he had always just known me sick...didn't even know I have a very fun high Spirited side to me...but she come bounceing back full force like she had never really left. But then i woke up on the 7th day...All of my symptoms were there...wow, thought i was dieing, it literally felt as tho my body were shutting down, could barely walk...was horrid...was down almost 2 months before i crawled back out again, forceing every step.
But, i came away with Hope, the hope that it will once again give me a reprieve, no matter how short, i will take full advantage of every good moment I have.
There are always going to be people who either do not believe, or who do not Understand, if they are fully in my life, then it is Important to make sure they do get it...not by complaining all the time, but by just learning to Prioritize, and not allowing anyone to make any decisions for you...keep ur life as simple as you can, so that when some fun stuff, or a bit of hard work comes along, you have the energy for it...you did not go out and Buy this Disease, you have nothing to Aplogize for, or explain...nor feel guilty, we have to learn how to deal with this new life we have been given, we are not who we used to be.
So, since then I've been seeing my internist. He is a WONDERFUL doctor, and really didn't want to treat me for this, but has been extremely understanding about the insurance. It only costs like $60 to see him. He has prescribed Tramadol (50 mg 3 times a day) and Lortab (10/650 twice a day). I had a complete stress out the other day and got seriously concerned about being dependent on the pain meds. There are days I take more. My doctor seems concerned because he delayed my prescription this month for like five or six days.
My husband is a former counselor for opiate abusers. He freaks over me taking narcotics - and thinks nothing of the Tramadol, which obviously is as addictive!!!! I think down deep he thinks I'm taking it for the 'high.' Admittedly after I take it, I feel like everything is ok, but some of that is relief from the pain. After I take it, I can actually get up and move around finally.
I publish a magazine, and for two weeks I work INSANE hours. Sitting in my computer chair for sixteen hours can be excruciating!! The added stress of meeting the deadline just really adds up to a body that hurts from head to toe!
Ok - enough whining! I think just knowing I'm not the only one, that I'm not losing my mind helps so much. I hate being doubted so bad. Its so unfair!
And I agree with exactly what you said - I am no longer the person I used to be, and I don't like that. I want to be the kind of person that could stay up all night. I feel old at 33. That is the toughest part.
I don't like to whine either, but this is a great place to do it. We all understand how hard some days are. As Spring gets closer and warmer, I know I'll be feeling better soon. I had to go on Prednisone for acute sinus infection, and the dr said it might help my fibro. Sure hope he's right!. Please take care of yourself. Excersice if you can, but don't overdo! Gentle hugs.