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linda miller

New member
Joined
Feb 13, 2013
Messages
3
Diagnosis
10/2012
Country
Can
State
New Brunswick
i was recently diagnosed with fibro after 2 years of being diagnosed with ankylosing spondolitis as well. I have been on permanent disability for almost 2 yrs. I am married for 24 yrs with 3 children ages 18,16 and 13. Need advice on how to manage the extreme pain without being so drugged all the time. I am currently on remicade, endocet, elavil 50 mg and naproxen. Would really appreciate any advice anyone can offer. thks
 

Janet L

Distinguished member
Joined
Jan 17, 2013
Messages
132
Diagnosis
12/2012
Country
US
State
Texas
Hi Linda welcome to our forum. I know your pain, that's the thing isn't it, avoiding the pain without being completely dependent on strong narcotics which end up dulling the senses and making life seem a bit numb.

Have you tried exercise or diet changes?
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Hi there Linda, welcome to the forum. I feel the same way you do about taking pain killer drugs, and while we do need them it is important to try and relieve some of the pain by natural methods. Some people like massages, I don't because it hurts me to much and I cannot find anyone who does gentle massages. These are a few things I do to relieve pain for a while or forget about it, do a hobby that takes your full attention, like knitting or crochet, sewing or crafts. Work on crossword puzzles or jigsaw puzzles. Watch a good adventure movie. Read a good book. Or relax in a tub of warm water with epson salts in it. Sleep better using a fiber or feather bed mat on top of your regular matteress. Get a vibrating mat that has controls allowing you to vibrate any part of your body that hurts. These mats feel like rollers are going from your feet to your neck and back again. Some have the choice of heat as well. I use mine often. Eat good healthy foods and take vitimins. Take slow easy walks around your house or yard, no speed racing for us. For exercise try walking up & down your stairs it helps keep knees limber and legs strong. And mostly do not overdo. No more taking on to many chores, be happy getting a few done a day. The worest thing is wearing yourself out by pushing yourself too hard, then you have no energy left and the pain can be a real nightmare to deal with. Good luck in all you do.
 

linda miller

New member
Joined
Feb 13, 2013
Messages
3
Diagnosis
10/2012
Country
Can
State
New Brunswick
exercise is extremely hard for me as my Ankylosing Spondilitis is in advanced stages which also has infected my organs as well. Waiting for appt with neurosurgeon to discuss surgery on my neck as well. I am on strict diet as I also have Diverticulitis. Drink at least 8 glasses of water per day and have to use meal supplement drinks as well to make sure I get my daily dose of vitamin.
 

linda miller

New member
Joined
Feb 13, 2013
Messages
3
Diagnosis
10/2012
Country
Can
State
New Brunswick
I have tried some of these but it seems even a little bit of movement causes me 3 days in bed. I guess the worst thing for me is haveing tolerance to this pain. I have never been one to whine but now I feel like the biggest whiner. I think the rheumy was right and that until they find the combination of treatment for my AS and Fibro that I need to try to be patient and tread lightly. I am hoping when i get the appt with the neurosurgeon that he may have some option as well.
 
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