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02/08/2008 13:30
lpete301
Posts: 17
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Does anyone have days where they feel "normal" and then the next day feel like they were hit by a train? On a good day I have pain in my neck and upper back, On bad days I hurt in both shoulders and left hip similar to tendonitis pain, plus the neck and upper back with migraine/tension combo headaches, severe chills and not able to get warm. On great days I feel almost completely pain free. Great days only come once in a few weeks, while good days are normal, bad days come 10 per month or more. But I always have some sort of pain.

I am getting fed up and need relief. I wish I knew what I was doing to get great days, but I cant nail it down.

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02/08/2008 13:39
spruce1
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Welcome Ipete,

Yes, what your describing can be very common. How long have you been dealing with the fibro now? It may help to keep track if you hwere over doing it the day before and then the next day you feel like a truck hit you. At times we push ourselves on those days when we're having a half normal day. If you could try to pace yourself a litle on those "normal days and see how you feel the next day.

With tis illness, you find that there is no rhyme or reason to our ups and downs and that's what makes it so frustrating.

Are you getting any help for your symptoms, such as pain?

Tis is a good place to be. As you get to know different ones, you'll see that we all feel as you do.

If ever you need to just talk or vent this is a good place to be!!

Hope you keep coming back!

Spruce

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02/08/2008 14:10
lpete301
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I have been on a long road to this place. In 2000 I hurt a muscle in my upper back near my shoulder blade. My doc put me on muscle relaxers and pain pills...no help. I was having severe fatigue and some stomach upset...figured it was from over medicating my shoulder with alcohol. I had already been on antidepressants for 2 years since my dad died then my mom got sick and I went into a months treatment for my alcoholism. After treatment my mom died 6 months later and then I found out I was preg with twins very high risk, they were monoamniotic with only a 20% chance of making it. I was tired and my upper back still hurt, but not as fatigued as before. After my twins were born I had anxiety that allowed me to do what I needed to do. When the girls were about 1 year old and out of any danger from health issues I started falling apart and have not been the same since.

I stopped eating due to abdominal pain, in and out of doctors trying to find out what was wrong. Started seeing a psych for mood swings and was diagnosed Bi-Polar...Wrong Wrong Wrong. Put on meds for it and messed up my thyriod so bad that had to see endocrinologist for it. Stopped all BP meds and went back on regular anti depressant. Gastro found Spinchter of Oddi dysfunction and fixed that. Also diagnosed IBS. Started eating again in the meantime waiting to find out about abdominal pain and mood swings went away. I was not BP, just needed to eat!

All the while my pain and migraines are getting worse and running out of options for relief. My thyroid is under control so why was I so tired still... no answer. When back to work as Dental Assistant after 5 years and my right shoulder put me off work for 8 weeks due to tendonitis and calcium on tendon that had to be fixed surgically. After getting back to work again Sinus and lymph node problems started showing up. Every three weeks I was getting a nasty cold. Lymph nodes in my left breast, chest, neck and face would swell, my IBS would go crazy, Abdom pain worsens, and my joints both shoulders and hands would hurt like crazy, Never had a fever and no blood tests came back abnormal. I have Raynauds in my hands. I had a laproscopy by my gynecologist to try to find cause of abdom pain yet there was nothing there. I finally told my regular doc that we had to look at the whole picture and not just treat things as they show up. At this appoint I was having tendonitis like pain in both shoulders and left hip. He sent me to Rhuem. who ruled out everything he could with blood work...nothing came back positive. So he asked me how I was sleeping. Not well so he put me on Zanaflex with no explanation other than to see if I could get some rest on this. No comment about Fibro, just come back in a month and let me know how your doing.

I called him last week, 1 week into zanflex med and asked him if he ruled out Fibro...he said "your on (such and such) medication. That is for fibromyalgia. I need a doc who will talk to me and tell me what he is thinking. He has not checked for the "points", and dont know if he even thinks I have fibro, but it fits.

So here I am. I know I left alot out of my story, but I didnt want to take up the whole memory on the website for it.

Linda

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02/08/2008 14:25
spruce1
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Linda, you've been thru a lot and so often things like this can set off fibro. I feel mine was from operations and infections and some other things. It's like your body can't take anymore. When he did the tender points, how many did you have? Can you remember? That's a little important, though not everyone has every tenderpoint but there should be enough to point you towards fibro. All the testing with blood work is important to rule out other things. It's so frustating and no easy answers ! My sister and I were dx with CFS (beleive me, it's not all about the fatigue) and she had such swollen lymph nodes her face would look swollen. Later in the years though she discovered she had thyroid problems and diabetes also. The lymph nodes doesn't remind me of fibro and that could be a seperate case aside from fibro. Do you like your doctor? Do you feel he's doing his all for you?

I know how frustrating this is and hope you can get releif and answers!

Keep coming back, you'll see others are dealing with so much like you. Hang in there and my thoughts are with you!

Spruce

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02/08/2008 14:32
lpete301
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He hasnt checked the points yet, but from the pics of them I think I have enough of them.

This guy doesnt talk to me about what he is thinking is wrong and what he wants to do to help me. I'd like to see someone else, but there are only 4 rhuematologists on my insurance plan in my area and they all know each other. Is there another type of specialist who can diagnose and treat this? What would it be?

I also need to go back to work, desperately, but I am having alot of trouble finding work. I think I might start another question about if anyone works from home and what they do.

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02/08/2008 14:51
Kgrin
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Linda I have went through many doctors and you know what I have ended up with? A family practitioner, she is awesome and she knows about the condition to boot. Of course she has done other tests too which she found out I have vitamin d issues as well as a thyroid that is on the low side, but she has been more then helpful. Her only concern for me is that if I consitently have to be on narcotics more then usual that I go to a chronic pain specialist because as a family prac she can't prescribe me more then a certain amount at a time. Other then that.. no rhumey..
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02/08/2008 14:52
spruce1
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Linda,

Sometmes people have used pain specialists and even first their primary who may suspect it. That's tough when your so limited in doctors. Ya know, even tho0ugh the doctors know each other, doesn't mean he may have a different opinion. In fact, such express to him that your very confused, that you feel like he's not given you a concrete dx of fibro! Just come right out and ask him! Sometimes we can be shy with docs but we need to express ourselves since this is what your dealing with and you need answers!!

Feel free to start another thread about working at home. You may find some ood suggestions....

Spruce

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