|
Users viewing this topic:
none
|
|
Login  | |
|
RE: Anybody out there with fibromyalgia? - 6/13/2008 7:06:34 PM
|
|
|
MissInnocent
Posts: 152
Joined: 5/3/2005
Status: offline
|
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.
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 6/14/2008 10:31:11 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 6/14/2008 11:10:42 AM
|
|
|
peace77
Posts: 791
Joined: 4/18/2005
Status: offline
|
The website http://www.immunesupport.com has many helpful articles and a doctor referral list.
Peace,
Anne
_____________________________
I GoodSearch for Deaf Missions.
Raise money for your favorite charity or school just by searching the Internet or shopping online with GoodSearch - www.goodsearch.com
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 6/15/2008 11:03:59 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
Thanks for the help, Anne.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 6/24/2008 11:50:26 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 6/25/2008 1:49:04 AM
|
|
|
Visionary2
Posts: 48
Joined: 4/6/2007
Status: offline
|
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.
_____________________________
We have all come to the right place. We all sit in God's classroom.
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 6/25/2008 11:51:35 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 7/5/2008 4:57:11 PM
|
|
|
Victoria72
Posts: 1
Joined: 7/5/2008
Status: offline
|
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
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 7/30/2008 11:51:08 AM
|
|
|
JCMK
Posts: 119
Joined: 12/30/2007
Status: offline
|
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.
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/9/2008 11:30:45 PM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/12/2008 8:32:11 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/12/2008 8:37:21 AM
|
|
|
daughter_of_faith
Posts: 1152
Joined: 1/10/2008
From: Great Plains, Kansas
Status: offline
|
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.
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/13/2008 8:29:08 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/14/2008 11:04:15 PM
|
|
|
daughter_of_faith
Posts: 1152
Joined: 1/10/2008
From: Great Plains, Kansas
Status: offline
|
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...
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/14/2008 11:10:05 PM
|
|
|
Liveloved
Posts: 1618
Joined: 1/22/2008
Status: offline
|
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?
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/16/2008 7:30:41 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/16/2008 7:35:39 AM
|
|
|
daughter_of_faith
Posts: 1152
Joined: 1/10/2008
From: Great Plains, Kansas
Status: offline
|
Hmmmmm....ok. I guess that makes sense now that you've clarified, Trish.
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/16/2008 8:02:17 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
Sorry, I should have said that clearer.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/16/2008 8:24:25 AM
|
|
|
daughter_of_faith
Posts: 1152
Joined: 1/10/2008
From: Great Plains, Kansas
Status: offline
|
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.
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/16/2008 8:33:33 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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.
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/16/2008 8:27:55 PM
|
|
|
Liveloved
Posts: 1618
Joined: 1/22/2008
Status: offline
|
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? 
No, I do agree with those recommendations and I try and have my glass of wine earlier in the evening rather than later.
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/17/2008 2:13:18 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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! 
_____________________________
*** Gone crazy. Back soon. ***
|
|
|
|
|
RE: Anybody out there with fibromyalgia? - 8/20/2008 8:12:29 AM
|
|
|
cherish405
Posts: 31766
Joined: 4/11/2005
From: The Land Down Under
Status: offline
|
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' | | |
Forum Tools
Printable Version
