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taking my chances with the firbomyalgia board readers

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Old 06-11-2007, 03:45 PM   #1
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taking my chances with the firbomyalgia board readers

Hi there. I'm female,44, caucasian and feel like a decrepit 99 year old. I've been to my doc a number of times with a complaint here and a symptom there, but it occurred to my I've never just written it all out in a copy she can keep to stew on and try to figure out what ails me. Does anyone else do that? My appt is Friday and I'm even thinking of mailing it to her ahead of time so she has chance to mull it over before our appointment.

Here's my list for the doc. I'm posting it to this board, because I think the gut reaction of a lot of people is going to point towards FMS, but I'm not convinced of that. For one thing, I don't have the spcecifically identified trigger points.

I have a hard time coming up with the right words to describe pain sometimes, and any input is appreciated.


1. every day: Pain in the Left shoulder and neck area with muscle tension throughout back; range of pain is anywhere from ďjustĒ tense to extremely painful. Usually the pain increases as the day progresses. I would describe the Ďextremely painfulí pain (which is centered about 2Ē down from the top of my shoulder) as feeling like something is pinching the insides together. The muscles underneath my arms (to the sides of my chestónot my armpits), especially the left side, are also very tight. (this isn't new paid I've complained about it for years and they only thing to ever help 'some" was a muscle relaxor)

2. Both feet; especially the right foot at the top of the arch and the area about 1 ĺĒ down between the big toe and the 2nd toe. It feels bruised inside. Iíve gotten cramps in my feet for as long as I can remember, and itís always been such a part of my life, that I donít think Iíve ever even mentioned it to a doctor, except for a chiropractor in 2002 who simply said the foot muscles were tense. It feels like Iím standing on stones and is worse than it used to be.

3. Right thumb at the joint has a tender spot like it is bruised on the inside; same feeling on left 1st finger at top joint and left thumb but not as bad. (This is new. The thumb/finger pain started this year.) I notice it most when I try to do something like get my dogs Prevacox out of the foil blister pack (where you have to push the pill through the foil with your thumb)--i get a little pins n needles feeling in that area then

4. Headaches every day, presumably caused by the muscle pain in shoulder/neck

5. fatigued / tired most of the time

6. sometimes I have a very annoying ringing in my ears and canít hear as well as normal; itís a vacuum-like feeling; I had this yesterday and today (Monday 6/11/07); prior to that I donít recall feeling this way since the end of December 2006

7. vision Ė fluctuates in that I sometimes have to rub my eyes or really focus because of blurriness. Had a vision checkup about 5 Ĺ months ago. My optometrist said my vision had not changed.

8. sleeplessness

a) I want to do Pilates exercises. My feet get sore very quickly though and tense up. I took Pilates classes for about 2 months in 2005 but even when I scheduled the classes for very early AM (when my feet werenít as likely to cramp up), they would cramp up even on some of the simplest moves.
b) I want to walk on the treadmill at least a mile a day, but again unless I can get that walk in before work, my feet will cramp up if I try to walk after work.

Medicine I take regularly:
1. Actonel once monthly
2. BC powders
3. Zyrtec
4. Ambien-CR Ė I donít like the way Ambien makes me feel the next day but do take it because otherwise Iíd toss and turn all night
5. Calcium carbonate 1200mq/day with 200 IU Vit. D

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Old 06-11-2007, 07:00 PM   #2
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Re: taking my chances with the firbomyalgia board readers

Many of your symptoms sound like they could be fibro related, but obviously need to be further evaluated by a doctor trained in diagnosing FM. I am guessing that most primary care physicians are not sufficiently trained and may miss the diagnosis. The best bet is with a rheumatologist, but you have to find a good one; it seems that many rheumys don't have the best bed-side manner which is vital to patient-care with FM...someone you can really communicate withm who will listen, and is willing to learn.

As to sending the info to your doctor in advance of your next appt, only you know whether it is likely that your doctor will have or take the time to review it in advance. For certain, I would print out a copy of it and take it with you to the appt. However, make sure it as brief as possible so that your doctor will have time to read it whether it is at the appt or in advance of it. I would also print out a FM summary from the Mayo Clinic and/or John Hopkins. While some doctors may not be familiar with FM, all doctors have heard of the Mayo Clinic and John Hopkins, and that information gives credibility to your concerns regarding your symptoms.

For neck/shoulder pain, you might want to try Malic Acid (get a fomula w/magnesium...not just Malic Acid alone) to see if that helps ....1200 mg 2x daily provides some relief. Studies have shown it has helped many. It helps me. It is NOT a miracle cure....nothing is with this stuff.....the best we can hope for is finding things that help. What works for one may not for another, but its worth a try.

Best wishes!

Old 06-11-2007, 08:26 PM   #3
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Re: taking my chances with the firbomyalgia board readers


Have you been tested by a Lyme Literate Medical Doctor for Lyme Disease?

Have you been tested for active Epstein Barr Virus or Cytomeglovirus?

What other type of test have you had run?

Hope you find some answers soon! It does get frustrating....

Old 06-12-2007, 12:53 PM   #4
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Re: taking my chances with the firbomyalgia board readers

hi fd,
welcome to the boards. yes take a list. i always do. copy and print what you wrote to us. take that. it's perfect.
have you tried regular ambien? i can't take the ambien cr. it makes me fuzzy and groggy the next morning. i have been on ambien for at least 6 years now. still works. i get about 6 hours sleep and wake up awake.
baclofen is a good muscle relaxer if you can take it. does not make you groggy. been on that when needed for 2 years. i can take it and drive.
again welcome to this space. there are some excellent people here.

Old 06-12-2007, 08:20 PM   #5
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Re: taking my chances with the firbomyalgia board readers

I suffer everything you do, especially the feet, but other symtoms everywhere on my body. I don't know if it will help or not, but I recently went with my Mom to the ER for a foot injury. She was concerned about gout. Doc told her that she did not have it (pain is very similar to what we experience) but he said something that blew us both away. Asperin and BC powders can agrivate and even to some extent, cause gout. You might consider trying tylenol instead if it helps you. As with any advice that you recieve here though, always remember to check with your doctor first. Like many have said, everyone is different.

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