Fibromyalgia- How it is

Kiba

Well-Known Member
#1
I found this video on Youtube of a guy who talks about his experience with Fibromyalgia and it really just does all the talking for me.. I relate a lot to what he says. I am frustrated with everything. And I wish I could do so much more. I'm tired of the stigma. I'm tired of hiding my pain. Some days I just wish I could muster the energy and calm down the anxiety enough to go to the store just to go for a walk. But my back has been killing me really bad lately. I have tried working 5 separate times. All to fail. And I am now severely paying for my last attempt to work. I don't know how I can accept this. But I somehow have to..

I cried today reading an article about a fairly popular man, a football player, who went to an anime convention recently. It made me cry because the last 2 times I have tried going to a convention I hardly could do anything.. I was constantly trying to care for myself and It's just so stupid to cry over.. I know it is selfish..

I'm not looking for answers here.. I am tired of all the theories and "cures" out there.. I am tired of being told just do this or that.. All I want here is people to understand what I go through.. And to be there for me to vent if I need it..

 

Kiba

Well-Known Member
#2
When Fibromyalgia is affecting you ability to function or hang out with family, friends, or just make it to appointments-

Options-
1) You say something about it- your lying and attention seeking
2) You don't say something or make up some other excuse- your lazy, an asshole, and just not trying hard enough

Its residential all over again in the real world.

Everything is a lie apparently.
And your just not trying hard enough.
 

SinisterKid

We either find a way, or make one.
SF Supporter
#3
I know pain, so I understand, and you can vent anytime you like, I simply do not mind anyone venting their anger and frustrations at me as I have had them both present in my own life for the last 9 yrs.
 

birdie5

SF Supporter
#4
I have it and I know what you are going through. Its one of those conditions that docs dont want to deal with, because its complex and not a one size fits all. I get sick of the "you cant be in that much pain" rhetoric. And I am like really? how the *#@$ do you know? I was on Opana which helped take the edge off of it. I ran out, and the new PA asked about withdrawal symptoms. I said "withdrawal symptoms? sorry didnt have any . And yes I am a addict and a liar ( sarcasm ). And people wonder why we get depressed and angry.
 

Wiltingone

Well-Known Member
#5
Yes Kiba and others I understand too. As you know the pain is everywhere. I was getting no pain meds. They offered me an ice bag. I asked where I should put it as my whole body hurt. So they offered me two ice bags. Lol. Wasn't laughing at the time. I was incredulous. Yeah. Medical staff don't get it.

Has anyone switched from gabapentin to lyrica? What was the difference. Also have neuropathy. Thanks!

Sorry to all battling this daily. *hugs
 

Kira

Staff member
Safety & Support
SF Supporter
#6
Thank you so much for sharing that video @Kiba

My mother suffers from fibromyalgia along with some other debilitating conditions that they just can't identify. I'm not sure the doctor's really know exactly what's wrong with her or ever will. It took many years, and many doctors, just to get this diagnosis.
First of all, I'm so sorry that you have this insidious condition. Please vent and rant as much as you need too. It's completely justifiable.
Secondly, I truly do thank you for sharing the video to show an insight into what it's like. I've obviously heard all about the pain and discomfort from my own mother, but to hear it from someone else puts a different perspective on it I guess. It's like the same story but with a different author.

Thank you again and I'm so sorry that this is the hand you have been dealt.
Please take care - Kira ox
 

Kiba

Well-Known Member
#9
I was in a medical study for a drug similar to lyrica.. But it was causing me to have something that looks like a mini seizure.. But my doctor told me it wasnt a seizure.. Anyway.. They kicked me out of the study because the FDA said they couldnt have anyone in study who had ever attempted suicide no matter how long ago.. So whatever.. I haven't been perscribed the "typical" medications. Or rather I cabt recall them being used / if they even worked at all. I was diagnoised a few years ago but have experienced symptoms much longer then that. They (the typical medications) have a low sucess rate anyway.. My doctor just keep switching my depression meds around. Which dont do anything to begin with.. Only zoloft did and he wont put me back on it because he thinks he can find something better that will help the pain AND depression... He wants to to get a DNA test because I dont process the meds correctly. Not on pain meds anymore.. They stopped working.. Sigh.. Cant find the paperwork for the DNA test.. Not sure if I can get a new one or not.. Need to ask.. Otherwise right now we are going the medical marijuana route.. It actually tends to have a higher sucess rate in symptom management then the typical pharmasuticals.. But generally Nothing really works.. Ive got some symptom releif from magnesium for muscle spasms and other conditions which were found at initial diagosis such as iron deficiency and vitamin D deficiency. Both now resolved. Sleep apnea now controlled, etc. My aunt and her daughter also have whatever this beast is.. My aunt is now on to some new idea of what she thinks is going on. She thinks we may have scleroderma.. Shes very focused on our potential (not proven) native american ansestry and beleives these issues come from that side. So I guess she is getting it checked by the doctor soon.. But in my case I highly doubt that is all it is.. Or even if thats part of it.. Yeah.. My symptoms are worsening.. And my depression is getting bad as of late.. Im tired.. Im canceling apointments frequently.. I cant sleep. And I dont really want to go anywhere.. It takes way too much energy walking and bussing everywhere.. I got a new game to help me feel better and sort of helping. But I lay in bed tonight and my anxiety is terrible. I can feel my heart beat like crazy.. Im suposed to go to the beach tomorrow. Taking my Service Dog with me. I think he will love it. But I alao wish I had the energy to do more with him. Lately I am only getting irritable and tired a lot.. Sigh.. :(
 

birdie5

SF Supporter
#10
Kiba I am sorry to hear that. The DNA test. Yes, I had that done, and try to find the paperwork because its worth it. .The company was Genelex. I was on Vicodin, but I was getting all of the side affects, but none of the benefits. I had the DNA test and was switched to Opana, which worked. But I moved and the docs in this state, state that Opana doesnt work for Fibro. ( so either I dont have fibro or the "experts" are wrong ). Hang in there.
 

Kiba

Well-Known Member
#11
Im going crazy.. My mom took me and my service fog to the coast for the day. It was fun but I seriously over did it.. Pretty much went to bed right after washing my dog and taking a shower. And woke up a few hours later in a 9.5(out of 10) pain scale in my legs and knots in my stomach making me want to puke.. Having some medicine now but wish I had something stronger.. :( why cant I do anything without seriously paying for it..?? Sigh.. Its making me so depressed..
 

StillSurviving

Well-Known Member
#12
I have M.E/CFS and also Graves Disease and Arthritis and I will be tested for Fibromyalgia when the health service get around to it and it's all ever so frustrating and people do think you are lazy and making the most of it.

I now go to the gym to try and fight it no matter the pain I am in and then people say it can't be that bad as opposed to thinking I am doing a good thing.

Lose/lose with most people, unfortunately.

I sincerely hope all of you with any health problem are respected and sincerely wish you all the best.
 

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