Our Newest Member

[Guest guest]

Burchfield wroteHi, My name is . I was diagnosed on May 1,2006 with Fibromyalgia. About 5 years ago I started having allergic reactions to the sun. At that time I wasn't sure what it was. I went to a few doctors, but my rash was always gone by the time I got in to see them. Finally I got in to see a doctor right as my rash started. My joints were creaky, and achey, I was photosensitive, I had a butterfly rash on my face, and I get cankersores all of the time on my tounge, and in my mouth. My doc did an ANA which came back negative, but he said that that can happen, and diagnosed me with Lupus in Oct 2003. I just dealt with flares by using heat, yoga, baths, and advil. I really did not want any steriods. About 10 months ago we moved from Utah to Idaho. I started a really bad flare in January, and decided I was bad enough that I wanted anything as long as it would help me to feel better. The

doc I went to see reran the ANA, and a AR. He also checked me for muscle disease, and ran some metabolic tests. He did a tenderpoint exam, and said I had 15 of the points, and he was almost certain it was Fibro. Labs came back normal. He has put me on 25 mg of Amitriptiline to help me hit stage 4 sleep, and I am keeping a journal for him. The meds do help me sleep some, but I feel so incredibly tired all day long. I am still taking Advil for pain, but it barely takes the edge off. Anyway, I do have some questions that maybe some of you can help with. 1st Does a person diagnosed with Fibro ever have to do the tenderpoint exam again? (The last one hurt so bad I was completely ill from the pain) 2nd Does physical thearapy work, or are there any exersises you have found to help? 3rd How long should I give this med a shot before asking for a lower dose, or different med? Thanks for listening, and for any advise you can give. I look forward to getting to know you all.

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[Guest guest]

First welcome . I'm new to this group also, but I have been made very welcome.

I don't know how many on this list are on Trazadone at night for sleeping. I was put on Effexor 75mg 3 tablets a day and 300 mg of trazadone at night to sleep. They started me out slow and kept increasing until I got relief. The trazadone was started out at 50mg tablets and every week he would increase by one tablet until I hit the 6th 50 mg. tablet and was getting a full nights sleep. Elival, Flexeril, nothing worked. I was up to 5 tablets of Flexeril and never did a thing for me to sleep. I know I have most likely misspelled those two meds. I'm sorry. The trazadone is also an antidepressant. But does let you sleep. I've had so much on my plate for the past 10 years. Some day I will write about it. I take Darvocet N 100 for pain. Have used Vicodin 7.5, but they just made me a zombie.

Physical therapy for me was very painful. We live in a retirement community and I am at the pool and jacuzzi ALOT. That has been the best relief for me.

This is a wonderful place for ideas. Everyone is so great.

Carla in Arizona

.............He has put me on 25 mg of Amitriptiline to help me hit stage 4 sleep, and I am keeping a journal for him. The meds do help me sleep some, but I feel so incredibly tired all day long. ...........

[Guest guest]

Dear ,

Welcome to the club! Its not a club people are fighting to get into, but it is a club none the less. I think I can help with your questions, at least give you a direction to move in. But one of the hardest parts of fibro. is it is a little different for each person, and often what works for one does not work for another. So unfortuantely, there are only generalizations and it takes time and work to find what answers are best for you. I am a retired RN and have had fibro. for about 8-9 years.

First you need to know that there is no cure for fibro. It comes in peaks and valleys. The peaks we refer to as flares, those can last anywhere from hours to weeks. The good news is after some time has passed, you learn by trial and error what works and you gradually have better control of flares, but never completely control them.

The question about undergoing tenderpoint exams. You will probably have to submit to that several times over the years. It depends on insurance and your circumstances. Each time you have to change doctors, they may do the exam. If you ever reach a point of being unable to work, you may seek disability. (some of us are struggling now with this issue, and some of us have been through the process) If you do seek this route, you will have to submit to the tenderpoint exam probably by more then one doctor.

The second question about physical therapy and exercise. Most medical opinions recommend some form of exercise to combat the disuse problems. This is especially hard, when you are hurting all the time. Light aerobics exercise, message and pain management is basically the best program available to fibromites at this points. These are the top three recommended treatments for long term quality of life. You might have to try several types of exercise to see what you can do and enjoy long term. The message is wonderful, but can also be expensive. The thing with the meds. is you sometimes have to try many before you find the ones that work best for you. I have been in and out of physical therapy for years, and I have to say it has really saved me at times. When I have a flare that I can't seem to get on top of, or if anything happens then I go straight to PT. Fibromites tend not to heal or "get back on thier feet" very quickly. For instance: I had a minor car accident 2 years back, and my doctor had me in physical therapy for about 3 months. Generally, fibromites also tend to have other physical problems to go along with the fibro. so bouncing back becomes a little harder and has to be worked at more diligently.

If you have a doctor you can talk to, great. If you do not, try to make that your first priority. Many rheumatologists are specializing in fibro. so that may be a good place to start. But most people who have fibro. have been through several doctors before finding one they like and trust. Just as a warning, there are still doctors out there who think fibro. is a mental disorder (hypochondriac) Do not let these people make you feel bad about yourself! Just keep going until you find someone who treats and communicates with you in a good, respectful manner. Too many of us have spent too much time with these uninformed medical people.

Well, that is more then enough from me! There are great people here, and you can find good support here. Also, there are fibro. support groups in many towns now. I don't know where you live, but it might be something you want to look into! Make some friends that understand what you are going through. Find as much support for yourself as you can, as this is still a very misunderstood disorder. Good luck in your new search! Don't worry, you will survive this and find your way through the maze! Be patient with yourself, and expect that from others as well.

Kellie

If logic tells us that life is a meaningless accident, don't give up on life, give up on logic. If logic tells you that in the long run nothing you do makes a difference, then don't live in the long run. Life is a series of moments--to live each one is to succeed.