how do you deal with it?? how can you make friends & family understand? if anyone suffers from this please tell me how??  thanks    =)

I would love to hear how people deal with this also.  I am so tired of being in pain everyday. 

I hope to help and get help here! I was diagnosed about 28 years ago and am still trying to find relief. I also have other conditions that add to the pain and tiredness......deteriorating discs/arthritis in the back and neck, and a heart valve problem. Luckily I am retired and able to work around how I feel at the moment. 
I don't commit myself to much of anything ahead of time as I never know what kind of day I will be having. If I feel good, I do what I can. If I don't feel up to doing anything physical, I try to at least accomplish something like paper work. 
Feeling cold bothers me; heat relieves pain. Use a heating pad, take a hot bath. 
I dress as comfortably as I can.....soft fabrics, no itchy, scratchy, nothing binding. Layers to keep warm or cool enough. 
Comfortable, restorative sleep is key. I have 2 layers of foam padding on the mattress, and am now changing to an ALL foam mattress. Again, nothing uncomfortable in bed fabrics either; Soft sheets, blankets and pillows. Sleeping alone sometimes is necessary. Sleep experts say to try and keep a regular schedule. I take a natural supplement with valerian and melatonin to help get me to sleep, plus I listen to books on CD, music, or meditaition CDs through earphones. Normally I have no problem getting to sleep, as I am very tired. If anything disturbs sleep it is pain, so take what you can for that if you need it. My problem is I am a night owl since I feel better later in the day, and terrible in the morning. I often tend to stay up too late trying to take advantage of that, much to my regret. Pay attention to your natural circadian rhthym. 
I also have massage pads and devices. If I could afford a massage more often I would do that, although sometimes being touched is awful. 
I have tried several different medicines and in different combinations. Sometimes I think a certain pill is not helping, but if I stop ,taking it I feel worse, so then I know it was working. Maybe the dose needs to be changed. 
It is very important to have an understanding DOCTOR. I previously had one who told me everything was in my head. I happened to be having an appointment the day of a significant birthday and his staff had black balloons all over the office. I asked for a slip of his prescription pad to write him a greeting which said, "You are not old.....It is ALL IN YOUR HEAD." .......and I never made another appointment with him. 
Learn to relax. Try various methods.......meditation, prayer, yoga. 
As for making friends and family understand, briefly explain the medical facts to them. Don't be afraid to ask for help with tasks, and don't let them bully you! My husband always used to say to me, "You are always sick!" and complained when I was lax with my housework while I was working a full-time physical job. Now he has cancer and all the medical side effects such as pain and tiredness. Guess what he doesn't say anymore!? 
I would not wish this feeling on anyone. I hope I have helped you with my hints. 
I still have not made it to a local support group as I keep forgetting. I have heard about brain fog, but I keep blaming that on my age and the side effects of meds. 


Just diagnosed...also have degenerative bone disease ...some days are really painful... I am trying to stay positive as i don't want this to dictate my daily activities.

Any thoughts???


i received this diagonois 16 years ago. I read up on it and when i learned it does not cause joint degeneration i was relieved. I must say at that time i had 2 small childeren so i just ignored it. i can now tell you that is the best way to deal with it.

Just push thru, take a nap when you need it. Most of all I find being productive is the most improtant thing. I didn't give in to it.I still don't.

I do find relief thru exercise and good company. some of the medication can be worse than the pain. Get good sleep!!

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