How do you cope with Fibromyalgia/CFS/ME when its so hard to even sit?

January 9, 2008 4:29pm CST
A big hello to everyone on mylot and happy new year. I have had CFS Chronic Fatigue Syndrome/M.E Myalgic Encephalomyelitis for nearly ten years and i find one of the hardest things to cope with on a daily basis is sitting comfortably, or not, so to speak. I'm okay in my own chairs at home and sofa but sitting on someone elses or in waiting rooms ect is really painful. Take today for instance i had to go see my gp about the awful headaches and pains that have increased recently, and as usual i had a 40 minute wait before i was seen. Well by the time i was called i was in agony and tears, purely because of the seats in the waiting room. The only way i can describe it is like my back, stomach and neck have been beaten with a baseball bat. Though i really do keep my chin up most of the time things can get you down. When you can't even sit like a normal human its bad. You sit there fidgeting in the waiting room all eyes on you. so just wondered really how other M.E & Fibromyalgia sufferers out there cope with this particular problem?
2 people like this
4 responses
RosieS57
@RosieS57 (889)
• United States
9 Jan 08
Well, FM and CFS are two distinct conditions. As an FM'er, if I am having a flare I cancel the appointments for that day because I just can't go on a flare day. I can never predict good or bad days, so I do find myself sometimes canceling at the last minute. I bring a pillow to sit on on my good days. I also don't sit for longer than 10 minutes at a time. Walking around a little helps the muscle pains subside some. I also take extra pain medicine with me.
goodbody33
@goodbody33 (170)
•
10 Jan 08
Hi Rosie, thankyou for your message and tips i had never thought about taking a pillow i feel embarrassed as it is. Do you think you ever get used to it? I think i am finding it harder at the moment as i have a new grandson, well a year old thats pretty new lol. I can't even hold him or pick him up as he's so heavy and wriggly. Even sitting down on the floor to play with him its destroying me.. Sorry it was my 40th yesterday and i'm feeling much older than that today, but i know i'll bounce back.. thanks again for replying and i hope you keep as well as you can under the circumstances.
RosieS57
@RosieS57 (889)
• United States
10 Jan 08
I'm 50 and have had a diagnosis of FM since 1991. I had my last child in 1995. During the pregnancy the FM was in remission but I had problems off and on with picking him up. He is rather well adjusted despite that. I long ago got over what people would think. The pain is so much more painful than any embarrassment could be, so I do what I have to. Don't focus on others and their thoughts...focus on doing what you have to do for you. Have your grandchild come to you and teach them carefully what they can and can't do. Once you do it isn't so hard to be around kids. Since you have CFS fatigue is the primary symptom and pain is secondary. So take your day in small segments so you don't get overwhelmed. You can do it -- but only by taking on a little at a time.
missybal
@missybal (4490)
• United States
9 Jan 08
I don't get that bad very often but when I am I pace the floor rather than sit down. If there is a hall way or if you can just step outside then just let the secretary know that you need some air. If it's a medical office tell them the situation and they should understand. Perhaps they could even call you in advance if they know they are falling behind and than maybe you can come a little later. Even worse than the pain I always can't stand the embarrisment of having people notice I'm not feeling well and the tear are forming in my eyes. I'm sorry you are going through this.
goodbody33
@goodbody33 (170)
•
10 Jan 08
Hi there, thankyou for your lovely message and for replying to my post its good to share what helps, you know new things to try out. You'd think i'd be used to it after so long. I hope you don't mind me asking do you get bad neck,back and shoulder pain that gets so bad that you get pain tingles and come out in what i can only discribe as a hot flush? I hope you don't mind me asking....
deebomb
@deebomb (15304)
• United States
10 Jan 08
Dear goodbody I wish that that was what you had in stead of the problems that You do. I have Rhuemadoid arthertis and I have problems sitting at the Dr office to sometimes. so do do get up and move when mu legs get to hurting beyond sitting still. I don't let it embaresse me because every one there has some kind of problem, some worse some better. I decided that other people in the office really aren't lookinng at me as much as I used to think that they did. They are wrapped up in their own problem or pain so they really don't notice what I do.
jrcrow79
@jrcrow79 (34)
• United States
19 Feb 08
sure..sitting can be painful because FM comes fro excess calcium which hardens over time..and gets bigger over time leading to RA in the end. www.fibromyalgiatreatment.com I was diag. when I was 18...now 28 and happily married..because of the Dr. on this website. He is the leading founder of FM for the past 40 yrs with a degree also in Endochronology...please read the entire site before wondering any questions Thnx, E