When I was first diagnosed, I was exhausted and achey all over. Mostly in my back and knees and it would wax and wane. Now the pain has spread through my entire body including my wrists, ankles and feet. Every morning when I wake up I dread getting out of bed because I am so stiff and sore, my pain level is a 10. My back, shoulders and neck are extremely sore and tender ALL the time, and I need to rest with my heating pad a few times throughout the day. This was not the… read more
Yes this is true, I had met people that were much worse than me (back when I was still working) and I would think "I guess you really just have to push through the pain or it is worse as you age" and how lucky I was to be able to still work and function. I thought yeah I am beating the odds wirking full time, single mother, busy from 5:30 a.m., until 11 p.m, when I was exhausted and could never sleep. Then I crashed one day and my eyes opened really quickly. After a long two years of resting, I can tell each day if I have done too much because I feel flu-ish (chills, body aches, coughing,pins and needle pain, dizzy) in addition to my everyday pain and symptoms. I then knew how different the severity was from person to person from day to day and how you cannot judge, one day I can shower and go to the grocery store then need to rest and other dates the thought of going to the grocery store are exhausting. So as was said above, more symptoms come into play over time, symptoms wax and wane but the pain, weakness, fatigue and pain when being touched never go away. Then you add in other age related items such as arthritis, migraines and there are no longer comfortable or well feeling days. Fibro just takes over your life.
Just read some of the new posts re: worsening FMS. I have read that it is 'progresseive'. Now that might mean different things in different cases, I really don't know. And I suspect the pro's don't either, because I have seen resources that contradict that. From my own experience, as well as the research I've done, I am convinced that it CAN be progressive in some cases, but not all. For example, I was doing pretty well today, had slept well last nite, better than usual, and got a few simple things done this a.m. I'm getting ready for a trip so had a to do list to work on. Then, everything went to hell (sorry) when I got a call from someone dear to me that they are divorcing! Without further details, my fibro flare was immediate. For the sake of the couple, I held things together, offered support and prayers, made some suggestions--you know, all that. But I knew other that prayer that I was impotent to help them. So my body's reaction is STRESS! So, just a tho't re: progressive vs. not progressive FMS--each symptom of this syndrome has a unique cause and effect. For me the cause being stress and the effect being fibro flare is an example. I hope this makes sense. With time we learn how to deal with stressors, with weather, with fatigue and whatever else. But, as humans, it is normal to react to certain things that blind-side us. Those without FMS and related illnesses are wired differently and are able to rationalize and deal accordingly. Those of us with FMS are more likely because of our wiring to react differently, including additional pain and the feelings of worsening and being out of control. I believe it's part of accepting and identifying your new normal; this is a personal process that takes time. The community of this team is one of the best things ever to help discuss, inquire, learn and get support. I hope what I've added is beneficial in some way. But know that you have my total support and my prayers as you journed through the phases of accepting and identifying your new normal. It's not that bad, I've found. Yes, I get out of sorts that I can't be and do what was, I worry about being a burden on my husband and children, while at the same time I thank God that He isn't finished with me and has more plans for my life--things that I would probably never think of if it were not for my FMS. God bless you and keep you. Sending prayers and gentle hugs!--J
I haven't been on this site for a while, but I really appreciate coming upon this question and the series of posts. Yes, Fibro gets worse over time. I was diagnosed in 1990 and put on antidepressants and klonopin for sleep. I was also told that fibro doesn't progress and what you present with today, is what you will have forever. Fast forward to 2008 when I got Lyme Disease. This is when my fibro turned a 180 on me. I too have had every test in the book for symptoms that couldn't be explained and thank God, everything came back negative. I have been treated off and on for Lyme for 8 years now, and still continue to show positive in my blood work. The symptoms of Lyme overlap Fibro and I believe my fibro would still be under control if I didn't get Lyme. Today I have problems over and inside my entire body. My symptoms include widespread pain daily, especially my neck and shoulders, eye problems (blurry vision), digestive problems (stomach bloating, hurting to the touch, gurgling all day), foot pain, outside ear pain (can't put my head on a pillow some nights). These symptoms came slowly over the years. I have so many issues that some days, it is hard to mentally deal with all of it, I haven't worked for 4 years because I never know when my fatigue is going to wipe me out, my muscles tighten up, which makes it hard to walk, or my pain gets so bad, all I want to do is be by myself. I fear that as I get older, I won't be able to handle fibro along with what comes with age. I exercise everyday regardless of the pain when doing it. I continue to take Cymbalta, Klonopin & Trazedone for sleep, and Tramadol 2x daily for pain. I am hoping that the people doing research on Fibro will one day find out what has gone wrong in our bodies and will develop a drug that will stop the progression.
Yea mine got worse following my diagnosis of 2yrs but doctors cannot specify how long it will last as it's unknown..every1 is different. I know people who do not av it as severe as me & others wth age it improved greatly that they can live a normal life. We just av til stay positive. Alot of docs..neuro physio's..pyschologist have said it's my positive attitude has got me through. Just keep believing someday u'l be healed & pray 4 a miracle..hugs 2 u all xx
There are a lot of emotional ups and downs..learning to live life differently,with Fibro,not to mention all the financial problems we acquire..having Fibro.Also dealing with friends and family..who do not understand...many many issues arise with having Fibro.For me its the emotional stuff that gives me flares a lot...feels like I have been hit by a truck,,Stress is another thing that creates more pain more symptoms..I feel for you ,,we are all here for you,,gentle hugs your way..