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Replies to 'Living with Chronic Pain'
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September 24, 2005, 7:29 am PDT
 Quote From: betty8271 I've had fibromyalgia for 3 years and have just been diagnosed with something more; Connective Tissue Disease (A cross between systemic lupus and Rheumatoid Arthritis). Do you see a Rheumatologist? If you can get into a good Rheumatologist, they run specific tests that can determine if you have more than Fibromyalgia, although I know Fibromyalgia is debilitating. Something I learned the hard way was get your doctor to refer you to a Rheumatologist and DO NOT TELL them you have Fibromyalgia. This is what I did to get into a Rheumatologist and he ran every test under the sun. You may already see one, but usually they do not want to deal with Fibromyalgia
I could be wrong, but I think you're doing too much. Swimming and walking are good, but anything else will send you into an ongoing flare. Yoga is great, but find something like "Easy Yoga" (I have this DVD and it's really modified perfectly). The hardest part is knowing your limitations.
Just remember that it's ok to rest.
My physician said for me to take a lot of magnesium for the muscular pain. I'm also taking a supplement called Hyaluronic acid and that seems to be helping the joint pain. People have had a lot of success with Aloe juice. I went into physical therapy and they let me try a TENS unit. That has been great! If you can get it on the right nerve in your leg and leave it on for 20 minutes, it sends endorphins throughout your body that can last 3 hours and really cut the pain level.
This disease is not happy. No one seems to really believe you're ill. "You look fine." Or they give you a lot of advice on what their friends/family did for a totally different illness that doesn't even pertain to what you're going through now.
Betty,
I have heard the saying of being trapped in an old body. I have joked and said the same thing myself. But now I've come to realize I am not trapped. I am unique. Having this illness has made me strong. I've realized so much about myself that I have not known. I have connected with people in ways I hadn't before this illness. This illness has tested my strength and made me a stronger person. You're probably thinking, "Oh Lord! How can anyone respond positively to such a painful illness?" Well, I've done some coping for sure. I've gotten past the helpless stage though. I no longer feel trapped.
People have told me I look fine. I know I'm very attractive! I am glad this illness does not show it's ugly face. However, it does sometimes, like when I try to walk or be active. I appear crippled. But I thank my lucky stars that this illness is mostly invisible.
Yes, people do give me advice on how to improve my health. Now I just listen and realize they do not understand, but are trying to help, because they care. I am grateful that they care.
Yours truly, Kristie : ) fyte4acure |
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January 19, 2006, 11:16 pm PST
Quote From: betty8271 I've had fibromyalgia for 3 years and have just been diagnosed with something more; Connective Tissue Disease (A cross between systemic lupus and Rheumatoid Arthritis). Do you see a Rheumatologist? If you can get into a good Rheumatologist, they run specific tests that can determine if you have more than Fibromyalgia, although I know Fibromyalgia is debilitating. Something I learned the hard way was get your doctor to refer you to a Rheumatologist and DO NOT TELL them you have Fibromyalgia. This is what I did to get into a Rheumatologist and he ran every test under the sun. You may already see one, but usually they do not want to deal with Fibromyalgia
I could be wrong, but I think you're doing too much. Swimming and walking are good, but anything else will send you into an ongoing flare. Yoga is great, but find something like "Easy Yoga" (I have this DVD and it's really modified perfectly). The hardest part is knowing your limitations.
Just remember that it's ok to rest.
My physician said for me to take a lot of magnesium for the muscular pain. I'm also taking a supplement called Hyaluronic acid and that seems to be helping the joint pain. People have had a lot of success with Aloe juice. I went into physical therapy and they let me try a TENS unit. That has been great! If you can get it on the right nerve in your leg and leave it on for 20 minutes, it sends endorphins throughout your body that can last 3 hours and really cut the pain level.
This disease is not happy. No one seems to really believe you're ill. "You look fine." Or they give you a lot of advice on what their friends/family did for a totally different illness that doesn't even pertain to what you're going through now.
Boy, am I glad to have found this message board! It's nice to know you're not alone... I was diagnosed with degenerative arthritis, fibromyalgia, chronic fatigue syndrome, and of course, depression! I was recently fired from my job as an "on time delivery courier" the day I came back from FMLA. I plan on fighting this, but finding a lawyer who's even interested is tough. I'm not even getting unemployment- my employer is denying that, too! In the mean time, I'm on the hunt for some kind of job an aching 40 year old single mom can do. It's really hard to get out of the blah's right now. I feel like one thing perpetuates the other. Lately I've been thinking if I just stay in bed, I won't get any more bad news! Does anyone have any advice or experience on how to climb out of this? |
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