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9 Replies
Debbie - November 13

Can anyone tell me do you sometimes feel like screaming and crying with pain.and sometimes feel like dying.Because I can barely be touched on my whole body and it hurts.And I am so tired don't want to do anything.Some people don't understand.I hope
someone out there does.I was diagnosis in 2000.


tonyab1838 - November 9

You are not alone! I have experienced the same, to where even sheets hurt me. I know how you feel. I sometimes just pray so hard for this to end, one way or another. Then I realized that my family and friends are to precious to go through the pain, of losing someone they love. Please don't give up. I know you feel alone but your not, we're here for you. Maybe your Dr. needs to try another drug or you need to switch Dr's. If you need someone to talk to my e-mail address is [email protected] I will be praying for you. Take care and God bless!


Jean - November 9

Hi Debbie. This is pretty scary I bet. I am hoping you have a good doctor who communicates well with you. A Rheumatologist diagnosis this condition and can help you with the pain and spasms that might be going on. You need to get your sleep under control. Keep a diary of your pain to show your doctor so he knows how to treat you each time he sees you. Stretching is very important in this stage and on going with this condition. Try not to over-do yourself until you can find your limits. Use heat on your muscles and message them. Educate yourself on this condition along with your family and friends for they will be yur major support group along with us if you stay with us. Don't give up, this will just take time but you have to work at this also. If you do anything take a 30 minute walk each day. Take Care, We Are Here For You.


Debbie - November 9

Hi Tonya and Jean.Your response to my guestion is deeply greatful to me.Today was a bad for me.I felt sick never before though.
And was so upset and tired I don't sleep very well at night.And I am tired when I wake up.The pain is so unbearable at times.I wanted to ask has anyone ever had their legs just to go out from under them.Thats really how it got started for me when I found out I had this.But I do get numb also and the tingleing feeling in my hands legs and feet.
My back kills me no matter what I sleep on.
The doctor is ok ,which he is Rheumatologist
but his answer is lose weight and I really don't weigh that much 140lbs.Which I know I could lose maybe 10lbs.But if you seen him I bet he weighs 400 lbs.I guess calling the kettle black who knows.anyway I wanted to ask what you do when your arms give out,I
can't hardley get them over my head.Especially when I need to clean. Thank you and God Bless you all.


Joni - November 9

Hi Debbie. I know the feeling with the arms. It actually feels like gravity is pushing against them with the pain, but to remain sedentary makes it worse. I try to do some arm aerobics or dancing using them with music. It is tough, I know. I am a hairdresser and closed my shop the end of Dec last year. I still try to do family/close friends but have a difficult time. I need to lose some weight, but again, that is tough. Just keep moving, praying and hopefully you will have better days. Just know people on here do understand. Write if you need more support.


tonyab1838 - November 10

Hi Debbie, my problems started in my arms and have gotten worse. To the point that I always have pain and weakness. I just keep a heating pad on them when the pain gets to intense. I have had my legs go out from under me. Sometimes when I am walking my legs get a mind of their own. Just keep exercising and taking your pills. I know it's hard to even think about exercising when you are in pain, but it does help. Just make sure that you stretch first. You just take care and I will be praying for you. God bless!


[email protected] - November 10

Hi Debbie: It's not weight. I weigh in at 150lbs. I could lose 10-12lbs easy but I think maybe you might need to see another doctor or get a second opinion. Dr. at times when they aren't sure about something will say something completely off the subject like lose weight or your brain misfired. I know the pain can be intolerable but I think you need proper medication to help you over this rough spot. Ask your doctor about Mucsle relaxers like Flexeril, which you can take 10mg three times a day. Ask your doctor about sleep medication like Lunesta which is for long term. Ask your doctor about a pain medication like Talwin NX to help relieve you of this pain up to 4 times a day so you can get caught up with your body because it sounds like you are really needing extra help in order to go forward. If your doctor won't help you in this way ask him for a referral to another Rheumatologist or a pain center. Continue doing your stretching every day to get those muscles loosened up. I know it hurts but it is necessary to keep moving. Please let me know how it goes and how you are doing.


Debbie - November 10

Hello Joni&Tonya&Jean You know that I am not on any medication.He just told me to eat right and lose weight.Until I found this web site,I didn't know you could be prescribed medicine for this.No wonder I am in so much pain.I have been taking over the counter sleepaides.But they don't help to good.As you can see Iam still up.The only thing I got perscribed was Motrin.And it hardly kills the pain.I don't think I have had a good night sleep in5 years.My body feels so run down.I am to young to feel like I am ninety.It makes me so depressed anymore .Guess I will change doctors, because I can't go on like this.Someone told me were I live which she is a nurse thatit gets worse before it gets better.Right now I really don't think it could be any better.


Jean - November 11

Motrin is for inflamation. Fibromyalgia is not inflmmatory you need another doctor, he's prpbably good but not in this area. Seek out another one and ask the question Does he/she treat Fibromyalgia. I already told you the medes to disguss with your doctor. Good luck and we are here for you.


Faye - November 13

Dear Debbie,I've had fibro. for about 10 yrs.I'm 56 yrs.old and have slept or layed on my recliner with a heating pad or ice packs far more than I've slept in my bed.I hurt from the top of my head to my toes,sometimes I can't stand anything to touch my feet my point is I can sympathize with you,there are many meds.out there for you to try but your Doc. has to believe in fibro.enough to prescribe them.I am on pain,muscle relant,nerve,nerve ending meds plus more I also have arthritis and interstial cystitis I have to really try to keep a sense of humor and hang on to my faith in God I know he helps because I've slept in my bed for 4 nights straight WOW I'm praying for you remember there are more of us out here.GOOD LUCK.



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