RE: Anybody out there with fibromyalgia? (Full Version)

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MissInnocent -> RE: Anybody out there with fibromyalgia? (6/13/2008 7:06:34 PM)

I have Fibro and it is a tricky little sucker to get diagnosed. For me the trick was to rule out other things, Epstein-Barre (which I did have and it still flares from time to time), Rheumatoid Arthritis, Lupus (that one scared me but luckily was ruled out), and check my thyroid.

Sadly, some folks, even doctors don't think it's real disease since there is no blood test. And then others can't find out what's wrong so they just give up trying and stick the name Fibromyalgia which I think it wrong also. I don't think your therapist should say it's Fibro for sure till a doc confirms it.



MissInnocent -> RE: Anybody out there with fibromyalgia? (6/13/2008 7:22:16 PM)

quote:

ORIGINAL: cherish405

I don't have a husband or kids, so from that point of view, it's easier on me. I'm also not working, so that also makes life easier for me. I just feel as though I'm doing nothing, unlike those who manage to continue to work/study/have families etc.


I know what you mean. I don't work, we leave on my mother's disability check and I'm fighting to get SSI. I wish I could function like a normal person. And am jealous of those with Fibro that can get along well. [&o]

joninon, I don't want to quote your entire first post since it was so long but...you mentioned the homeopathic doctor...I was led to one of them a couple years ago. Like teachered said I discoverd a lot of allergies or sensitivities as he called them. Anyway due to circumstances beyond my control I was no longer able to keep up with the appts. I have oftened wondered why did God bother giving me that knowledge and very very limited access to that doctor if He did not mean for me to be able to keep up with the treatments and get cured. *double* [&o]

Anyways, Trish I hope it all works out for you.



cherish405 -> RE: Anybody out there with fibromyalgia? (6/14/2008 10:31:11 AM)

Thanks MissInnocent.

I'm going through the testing process of ruling out things like lupus, rheumatoid arthritis and checking my thyroid etc. I find out the results on the 24th.



peace77 -> RE: Anybody out there with fibromyalgia? (6/14/2008 11:10:42 AM)

The website http://www.immunesupport.com has many helpful articles and a doctor referral list.


Peace,
Anne



cherish405 -> RE: Anybody out there with fibromyalgia? (6/15/2008 11:03:59 AM)

Thanks for the help, Anne.



cherish405 -> RE: Anybody out there with fibromyalgia? (6/24/2008 11:50:26 AM)

Got my test results back today. They showed nothing. He's going to try me on prednisone for a few days to see if that works for the pain.



Visionary2 -> RE: Anybody out there with fibromyalgia? (6/25/2008 1:49:04 AM)

I got diagnosed at a Rumatology clinic. My regular doctor thought I had it and he was right. I am thankful that it started after I retired because I most certainly could not work with it. Some people of working age can get on disability because of it. Also thankful that it is not a life threatening thing.

However there is no cure. I cannot hardly function some days and dislike having to miss church so much after going most every Sunday all these years. And they do not understand as when they see me I don't look 'sick'

I have been on many many meds and still to find one that works well. The nearest specialist clinic is too far away for me to go but the doctors there have online advice.

I cannot do a lot of things I use to and seldom go anywhere as it is a strain just to dress and drive. I spend a good part of the day on the interenet.

Pray I can find someone to help clean and do yard work as things are getting out of hand.



cherish405 -> RE: Anybody out there with fibromyalgia? (6/25/2008 11:51:35 AM)

Visionary, I know what you mean about people not understanding what's going on because we don't look any different to anybody else. We look normal, but they don't know the pain going on inside of us.

I hope you can find the help you need soon.



Victoria72 -> RE: Anybody out there with fibromyalgia? (7/5/2008 4:57:11 PM)

Hi Cherish. I just wanted to tell you to be careful with the prednisone. Aside from bad side effects, it tends to make fibromyalgia symptoms worse in most people. I have both Lupus and Fibromyalgia (yes, its possible) so I have to be really careful with it. I hope you figure out whats wrong really soon.

Blessings,
Victoria



cherish405 -> RE: Anybody out there with fibromyalgia? (7/7/2008 12:36:03 PM)

Victoria, thanks for your concern. I'm not on prednisone any more. I was only on it for 4 days. I've been put onto sulphursalazine instead. That's supposed to take about 3 months to kick in.

Ouch about the lupus and fibromyalgia at the same time! [:'(][:'(][:'(]



JCMK -> RE: Anybody out there with fibromyalgia? (7/30/2008 11:51:08 AM)

I was diagnosed with FMS three years ago. I believe that I have been diagnosed correctly. For one reason, I had cancer the year before, so my Doctors were right on top of things and ran all kinds of tests to make sure it hadn't spread. I felt frustrated to a point because it took 18 months and going to many different specialists to get the diagnosis. However, after hearing and reading stories from other sufferers of this illness, I realize that I was blessed to get help as quickly as I did.

As so many people have said on here, my Doctors eliminated many other illnesses first. However, there IS one symptom/complaint that is specific to FMS, and that is the "pressure points". They are in strange places, IMO, but when my Doctor pressed on them, it surprised me how many of the pressure points hurt. I don't believe that any other illness has this particular symptom exclusively.

After taking several different medications, I have found that Lyrica made a very positive difference for me. It is the ONLY prescription approved by the FDA for Fibromyalgia. There are side effects the same as there is for any drug. Remember, some people die from Penicillin (sp?), but it wasn't taken off the market because it helps too many other people.

My side effects from Lyrica are sleepiness (Thank God! for sleep), and a slight hangover in the mornings. However, I would rather be slow-going in the mornings due to a little bit of the medicine, than because of the extreme fatique and chronic pain.

Otherwise, Lyrica has been a life saver. Before I started taking it, my life was basically controlled by FMS. I couldn't do anything or go anywhere. I felt awful all the time. Now, I live an "almost" normal life.

I was approved for Disability as there was no way I could work 40-50 hours a week. Now that I am better with Lyrica, I believe that I could work part time, but wouldn't be able to commit to set hours due to the irregularity of the symptoms. (Unexpected days of not feeling so good keeps me from making commitments.)

Stick with it and constantly ask your Primary Care Physician to give you referrals (if your insurance requires them) to see different Specialists. And keep pushing for a diagnosis until you get one that you believe. Trust your instincts. I knew that it was FMS after I did my own research along with seeing all the Doctors.

There is help and your life can be better. It just takes time.



cherish405 -> RE: Anybody out there with fibromyalgia? (8/9/2008 11:30:45 PM)

I finally see the rheumatologist on Tuesday. Hopefully then I'll be able to get some help. I don't know if we get Lyrica here, but I guess we'll find out.



cherish405 -> RE: Anybody out there with fibromyalgia? (8/12/2008 8:32:11 AM)

It's official. I had an appointment with the rheumatologist and I have fibromyalgia. Now I know what's causing so many of my health problems.

She doesn't think that Lyrica is appropriate for me.



daughter_of_faith -> RE: Anybody out there with fibromyalgia? (8/12/2008 8:37:21 AM)

Sorry to hear, Trish, that Lyrica isn't an option for you. Does the doctor have any other suggestions?

How are you dealing with the official diagnosis, Trish? I know you've been wondering and fairly certain for awhile but I was just curious. Been stalking this thread for awhile (not sure if I've posted) as I have a SIL with fibromyalgia.



cherish405 -> RE: Anybody out there with fibromyalgia? (8/13/2008 8:29:08 AM)

She's suggested some slightly stronger pain meds for me. At the moment I'm taking panadol, which isn't very strong. It doesn't even touch the sides for me.

How am I doing with the diagnosis? To be honest, I'm relieved. It's not good news to have fibromyalgia, but it's a relief because now I know what's wrong with me. It's not just a bunch of random symptoms, which is what I thought it was before. I knew something was wrong, but now I can put my finger on it. I've bought my rehabilitation physiologist some flowers to take to her tomorrow when I go to the gym. Nobody joined the dots together until her. I'm so thankful.

One thing I've been told to do is change my sleep hygiene. I normally go straight from reading the forums here straight to bed. I can't do that anymore. No TV an hour before bed, or in my case, internet as it's too much of a stimulant. I have to do something really relaxing the hour before sleep so that I can wind down. As she explained to me, sleep and fibromyalgia are like the chicken and the egg. Fibromyalgia happens because you don't get decent sleep, (in part). You have to sleep well to get rid of fibromyalgia. So sleep is an important part to deal with when you have fibromyalgia.

I go back and see her in six weeks.



daughter_of_faith -> RE: Anybody out there with fibromyalgia? (8/14/2008 11:04:15 PM)

I didn't realize that about fibromyalgia...the sleep aspect. SIL keeps weird sleep hours.....

Hmmmm......

I know her doc told her to do little puzzle things (like a computer game) to help stimulate her...but she's doing those during the day. Sounds contradictory to what your doc has said though...unless I am misunderstanding...



Liveloved -> RE: Anybody out there with fibromyalgia? (8/14/2008 11:10:05 PM)

No, the sleep thing is definitely a part of fibro. What I remember is that there is a problem re: seratonin uptake? or something like that. That's why I was put on amitritylene and it was a miracle drug for me. I began returning to a regular sleep cycle and the wellness followed.[:)]

Anyway, I'd be curious about any other changes re: sleep. You mentioned a relaxing activity an hour before bed. Did the doctor recommend other changes to promote good sleep?



cherish405 -> RE: Anybody out there with fibromyalgia? (8/16/2008 7:30:41 AM)

Faith, you're not misunderstanding me. It's fine to do puzzles and things during the day. I do. The thing is not to do it in that hour before you go to bed at night. That's the time you relax. You can have a warm bath with candles, read a book, listen to some relaxing music etc. Just as long as it's relaxing and not stimulating.

Yes, there is a problem with seratonin. That's why they say to go on a low dose of antidepressant. I was already on an antidepressant before being diagnosed.

Re sleep? I was told no sleeping during the day unless I absolutely needed it. Even then, I'm to limit it to no more than 30 minutes. If I sleep all through the day, I won't get a good night's sleep. I've been told to exercise as much as I can during the day, but not enough to cause pain. Then I feel tired come night time. Also, I was told no stimulants after noon. Things like tea, coffee, chocolate, alcohol etc.



daughter_of_faith -> RE: Anybody out there with fibromyalgia? (8/16/2008 7:35:39 AM)

Hmmmmm....ok. I guess that makes sense now that you've clarified, Trish.



cherish405 -> RE: Anybody out there with fibromyalgia? (8/16/2008 8:02:17 AM)

Sorry, I should have said that clearer.



daughter_of_faith -> RE: Anybody out there with fibromyalgia? (8/16/2008 8:24:25 AM)

That's ok. I was just confused because my SIL's doctor has advised her to "do" things & it sounded like your doctor was saying make sure to relax before bed. Her doc may have told her that (trying to think). I haven't really talked to her too much about it as she lives far away from me. Mostly I've popped in here to see what doctors are doing to see if there is something her doctor isn't recommending that maybe he should. It's hard to see the kind of pain she lives with on a daily basis on the few times that I've seen her.



cherish405 -> RE: Anybody out there with fibromyalgia? (8/16/2008 8:33:33 AM)

If the sleep patterns are really strange, then maybe she needs to review what she's doing.

It is a really hard thing to live with though.



Liveloved -> RE: Anybody out there with fibromyalgia? (8/16/2008 8:27:55 PM)

quote:

Also, I was told no stimulants after noon. Things like tea, coffee, chocolate, alcohol etc.


Does this mean I have to start drinking my glass of red wine with my breakfast?[:D]

No, I do agree with those recommendations and I try and have my glass of wine earlier in the evening rather than later.



cherish405 -> RE: Anybody out there with fibromyalgia? (8/17/2008 2:13:18 AM)

I had been thinking it would be really hard for those who drink. What do you do? Have it with breakfast or morning tea? (J/K) I rarely drink. Maybe once a year if that. But it would make things really difficult if you went to a wedding or something and they had alcoholic toasts or you just wanted one. I usually do the toasts with juice anyway, but it would make things interesting.

I'm more upset about the no chocolate after noon! [:o]



cherish405 -> RE: Anybody out there with fibromyalgia? (8/20/2008 8:12:29 AM)

I have more questions relating to fibromyalgia. Anybody could answer, but some are especially for those who are single.

How do you deal with knowing that you could have this condition for the rest of your life?

If you are single, does this affect how you view see marriage?

I'll give you my scenario and see what you think. I'm single. One day I'd love to be married. The way I am right now, I can't see myself ever working or getting married. I don't get out much due to the fibromyalgia. Even if I did, I feel as though I wouldn't be able to really offer anything in a marriage because I wouldn't be able to provide anything financially. Movement is extremely painful, so doing household chores would be extremely difficult, however, I certainly would be trying to do things. Pain is a real issue, and I wonder how I could even hug somebody. It's not that I don't like them, but hugs can be very painful. My hands get very painful, so I wonder how I'd even go holding somebody's hand! To me, I feel as though whoever I married, if I ever married, would be working and looking after me with very little in return because of this condition. What do you think?

I think it's different for those who are diagnosed after marriage as the spouse knew them before the diagnosis. There's already a deep relationship going on, not something that confronts them from the first moment.

Am I selling a potential partner too short? Or would I just be a burden to somebody?



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