Fibromyalgia

[allieisme]

Nice to meet you too YellowHummerChik..
I think you are the youngest I've read that is going through this.. This whole battle with Fibromyalgia seems like it is spreading like wildfire these days. I had never heard of it before until I started getting symptoms. I dont think I have been pain free since I've had this, I usually hear people have mostly good and bad days, but I think all my have been mostly bad.. I dont understand why the doctors dont know more than they do..
I just dont get it

 

[YellowHummerChik]

My mom and I both have learned that doctor's aren't as smart as they seem to be, no offense to any doctors, or anyone related to one, I'm just talking about the doctor's we've been to. They try to just lump it up with something else, sometimes they even look at us like we're crazy. lol

 

[alaurie]

I thought for years I had fibromyalgia due to chronic pain, IBS, times of mental fog, poor sleep but finally saw a rheumatologist a little over a year ago who ruled it out due to lack of pain at the traditional pressure points. I'd had pain since age 22 so needless to say, I had been seeing a psychiatrist for 5 years or so for chronic pain. Through a process of working with her on the sleep issues, my real diagnosis turned out to be bipolar disorder. The bipolar disorder was preventing restorative sleep which was causing the pain. Finding the right BP meds and exercising - walking and Susanne Deason's balance ball series (combination of pilates, yoga, stretching) have dramatically reduced the pain. I still have some episodes of poor sleep and pain. Meds don't completely control bipolar disorder, but at least now I know I'll cycle out of the "flares" - and also the bad times are not nearly as bad now.

Other symtoms I have that are associated with bipolar disorder are migraines (since age 4), panic attacks during teens and early twenties, bouts of depression during childhood and adolescence, bouts of insomnia since 18 months old.

Something to keep in mind for those of you that don't fit the typical pressure points diagnostic criteria for fibromyalgia and have bipolar disorder in your family. I had no idea how many of my relatives are BP until my diagnosis.

 

[Greeter]

When people ask me what FMS feels like, I usually tell them that it feels like I have the flu times 10.

That is a good way of putting it.

 

[Greeter]

I have fibro but as part of a larger problem- Multiple System Atrophy.

The really annoying part that is caused from the fibro is the sudden mystery pains that comes from it. Two of the worst pains that doctors can not explain or do anything about is a pain in my right side that when activated makes it very difficult for me to breathe. The second one is in my feet where it feels like I have stepped on a nail and it has gone through the foot.

I have noticed that a few people mention problems that are also associated with CFIDS. Doctors told me that the two often go together.

 

[Greeter]

Oh, one thing that has helped me (but not completely yet) is acupuncture. It hasn't taken care of everything yet but it has made a significant change.

 

[allieisme]

Oh, one thing that has helped me (but not completely yet) is acupuncture. It hasn't taken care of everything yet but it has made a significant change.

I'm not sure I'd like all those needles poking at me though.. Does it hurt when they do it?

 

[LynneClomina]

oh i found acupuncture extremely painful. the lady who was doing it didnt know why....

i was diagnosed CFIDS/ME in about '92, after being sick since '90. i was TWO trigger points shy of a diagnosis of Fibromyalgia. i was taking ibuprophen then naproxen daily for pain. it eased up for a long time about 5 years ago, but lately i've been having pain again, especially around those dang points and my face. anyone know of a link that talks about the trigger points needed for diagnosis these days? i dont know what if anything has changed in the last 14 years.....

thanks.

 

[LightHearted]

anyone know of a link that talks about the trigger points needed for diagnosis these days? i dont know what if anything has changed in the last 14 years.....

thanks.

http://my.webmd.com/content/article/78/95601.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}

 

[Greeter]

I'm not sure I'd like all those needles poking at me though.. Does it hurt when they do it?

I'd say one out of every thirty or so needle will find a sensitive spot but the pain lasts a very short time (about ten seconds at most). The benefits have outweighed that by a great deal though. The pain I get the rest of the day has been much less.

 

[LynneClomina]

http://my.webmd.com/content/article/78/95601.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}

thank you for the link - though what i am actually looking for is the NUMBER of trigger points NEEDED FOR A DIAGNOSIS, not the total number of trigger points there are. when i was being diagnosed with CFS, i was told that out of the 18 points, something like 13 needed to be painful to make a diagnosis, and i had only 12 points (one less than whatever the needed number was). i am wondering what the number of points that are required to be painful are.

 

[LightHearted]

thank you for the link - though what i am actually looking for is the NUMBER of trigger points NEEDED FOR A DIAGNOSIS, not the total number of trigger points there are. when i was being diagnosed with CFS, i was told that out of the 18 points, something like 13 needed to be painful to make a diagnosis, and i had only 12 points (one less than whatever the needed number was). i am wondering what the number of points that are required to be painful are.

Ah. In that case, 11 of the 18 points is needed for a diagnosis.

 

[LynneClomina]

ahh. thanks!

 

[LightHearted]

I went to Alaska for a couple weeks at the beginning of July. I was worried that I wouldn't be able to make it two weeks with out seeing my Chiro. While I was in Alaska, I went to my Dad's chiropractor after I had been there for a week.

He was one of the people that I have been warned about - One of the people that don't think that Fibromyalgia is a real condition, or a real disease. He seemed to think that not many doctors diagnose people with Fibromyalgia when they don't know what's wrong with them.

For this reason, I was reluctant to let him treat me. Books that I've read have said that when you go to a health care provider, if they won't acknowledge the fact that FMS exists, that you need to turn around and walk out the door.

Something inside me told me to let this chiropractor work on me, and to give him the benefit of the doubt. He practices a different type of Chiropractic Care than the one that I regularly visit.

Anyway, I went to see this chiro. four times while I was on vacation (had to pay $50 out of pocket each time!), and although I definitely wasn't healed, I was seeing a significant improvement.

When I came back home, I found a new chiropractor that practices the same sort of care as the one in Alaska, and I have seen a considerable improvement.

I'll find out what method my chiro practices, and I'll let you all know, so that you can look into it, if it's something that interests you.

 

[allieisme]

Hmm... I was told about a chiropractor.. But I still havent been to one yet..

 

[hollow rain]

wow...for some reason i didn't think for a minute that there would be a FMS type of thread in here! I personally have CFS and some other stuff, got CFS after a bout of glandular fever when i was 15, i am a lot better now than i was back then though. I still struggle with tiredness and pain, which is more to do with my allergies than with CFS i think, but i just adjust my lifestyle to suit. My mum though has had CFS and FMS since before i was born, and at the moment her pain is so bad that she can hardly walk. I recently dropped down to part time uni so i can help look after her more, and we will probably end up seeing if i am elegable (sp?) for a carers allowance. Up until recently i had b een really struggling with the responsibility of helping her, as well as my sister with her kids (she is a single parent with 3 kids and twins on the way) but recently God has helped me to accept this challenge with joy and renewed energy. ITs definitly not easy...and i HATE the fact that i have to clean the house everyday to keep the thing clean...but the rewards are limitless...and well...now whenever i start to waver in my committment i say a lil prayer and just think of what mum said to me a couple of days ago..."Gin, I need you to be my legs". We will never give up on her healing though...i know it will come in God's time.

hehe ok...didn't mean to babble quite so much

Cheers and huggles
Gin

 

[LightHearted]

Gin, I hope things get better for you.

Next Sunday night, I will be going to the hospital to have a sleep study done on me. I hope that they will be able to find out why I can't sleep at night. I've wondered for quite some time now if I have CFS. I guess I'll soon find out.

 

[hollow rain]

Thanks muchly LightHearted

Good luck with the sleep study...let me know how it goes...if thats alright with you of course

*huggles*
Gin

 

[LightHearted]

I'll let you know.

 

[LynneClomina]

i had a sleep study done, becuase they thought maybe narcolepsy was the basis for my fatigue, but it didnt show. but it often doesnt, AND the weird thing was, there was a work crew working on the roof right over the lab, and they didnt take the noise into any consideration!!!!

but hey, i'm not falling down when i laugh anymore.