New to Forum

Hello I am new to the forum. I had to find this place. I am so glad I could find people who are suffering like me. I have just went through 50 straight days with a grueling migraine, went to ER and got a shot and it didn't work. I was recently put on medicine for migraines, sumatriptan and the prevention one topamax. My legs and arms feel like they are going to explode at every minute, I go through this from time to time, but for the last few days I think it's been the worse. My husband is very insensitive and doesn't understand what I'm going through, no one does. So I just pray. I need someone to talk to. Just sitting here my legs are in so much pain and I can feel them going numb. I see a Rhuematologist, and a Neurologist, I am on Neurontin, but can't take much of anything because I've had two open heart surgeries and have a prosthetic heart valve and I'm on warfarin for the rest of my life, so they don't like giving me anything that contains aspirin.

I read in places on the internet that people do suffer like this, it is so much worse than what I'm reading about. I have to wonder sometimes is this really Fibromyalgia? Because sometimes I want someone to shoot me up with something just to stop the pain. It is just horrible!

Anyway glad to finally find someone like me and glad to meet you all.

Welcome!!

Glad you found this forum..
There is also a 'chronic pain' forum that you can post to & look thru .. As well as the very first thread on this one: 'fibro 101'

These posters are my main sources of support - noone understands like someone 'in your shoes'..
There are numerous posts from others who find it disconcerting to be doubted by family & friends.

When I had (have) a chance, I went back thru older postings & read any that caught my eye..
would have been better, probably, to start at the beginning, reading oldest ones first, but good ole fibro fog did not figure that out for awhile.

One tip: if you want to read one particular posters' last ten entries you can by clicking on their name..
There are several folks that I usually check their updates as I am especially concerned about
Or maybe someone has written that they were scheduled for an MRI or other test
or had DR appointment
or have been sick I use this feature.

Family

Also is a search area for using keyword - I try to remember to always use that before I post a new thread, in case someone has already had the same idea & often they have..

Lots of info here, so much kindness & caring..

If you are interested in facebook there are numerous.. use searched for fibro, chronic pain, invisible diseases, etc
Again, welcome

Thanks everyone for welcoming in to the forum, I really needed that.

ak angel: Yes I have been diagnosed with fibro and I am seeing a rhuematologists for it. I have accepted I have only fibromyalgia although at first they thought I might have had Sjogren's Syndrome at one point. I guess because I had something come back in my blood work. But they said I could have an autoimmune disease show up down the road and I could not have one show up at all. If that makes sense.

Myself09 I used to take flexeril for years and they drained all my energy the next day, they really help with pain a lot but they do take a lot of energy they next day. The warfarin clinic I go to don't want me to take supplements and things to throw off my INR, all the doctors are trying to give me meds that won't make my INR go crazy or make me bleed.

Diane: Thank you for all the information!

Also wanted to ask does anyone have that thick mucus? I've been choking on it for years and now I'm finding out it all may be connected to fibromyalgia, been going to the doctor for years for it.

Thanks again! So glad to finally find people who are going through the same pain I am going through daily.

Hi there Sherrine, glad to meet you. I have been checked out for all those diseases from my Rheumatologist and that was one she is looking for. When I say my legs feel like they are going to explode, I mean from the pain, the pain is so intense and the pressure from the pain. I don't know how your pain is but mine is very intense with a pressure like feeling in my arms and legs and they go numb from the pain and have a burning feeling on top of legs at times.

Thanks about the Sjogren's Syndrome information, I will check that out.

And thanks for the advice on the drug site, I am a research junky and research everything so I've been there and done that on almost everything you can imagine, so I practically know about just about everything on the drug interactions.

I was taking tylenol along with the neurontin and it was working fine until I got the 50 day migraine and had to be sent to a neurologists who put me on sumatriptan and topamax and took me off the tylenol and ultram, which I never really took the ultram anyway because it gave me anxiety attacks.

I really can't take too much because I use warfarin but I could really use a muscle relaxer in these hard times, when I need some peace from the pain. I was on vitamin D, need to get back on it quick. By reading this forum I thought I was not exercising enough but may have been over doing it when I was. I do the treadmill because I have to because of my heart, so I don't know, I have to do it, but maybe try to do it at a minimum every other day.

Thank you so much for everything Sherrine!

Acupuncture can relieve a migraine, believe it or not.

I was the world's biggest skeptic until I had spent two days under the covers or throwing up, drapes closed, lights off, couldn't tolerate sound, etc. you get the picture. My husband came home from work & whispered that I should put on my clothes as he was taking me for acupuncture. I refused until I didn't have the strength so I went, & walked into the clinic with my eyes closed, praying we could get this over with so I could get back in bed.

Within 15 min after the doctor inserted the needles & turned on the machine, I opened one eye, then the other, then thought, what????!!!! It worked! On the way home I asked my husband to stop and get me a burger.

That doctor no longer practices here and I have yet to find another doc who does acupuncture, but I understand that it has been used successfully for fibro. Has anyone tried it? I think it's worth a try.

That's discouraging, Sherrine. I wish our doctor friend hadn't moved because I could have tried it for a while at no cost to me. If I get another migraine lite that one, I'll be happy to pay, but $600 a month, not knowing, is crazy expensive.