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Living With Fibromyalgia - Online Support Group

Rejoining Member

#1

I guess I did this backwards. I responded to posts before introducing myself, again, to the forum. I’m a returning member. I was here before it was a 501C (3) organization. Like some of you, I started getting emails about the activity on the website, so I decided to “re-join”.

I’m not exactly sure when/how I managed to get this horrid disease/malaise/syndrome—take your pick. Sometimes, I think I was born with it. But then, I remember that I was diagnosed with what doctors today call silent rheumatoid arthritis. That’s when the disease attacks without leaving outward traces or popping positive on tests. (Which it did pop positive when I was 21.) I was, by the way, born with a protein rash, if that has anything to do with my eventually getting fibromyalgia. I recently found out that a male cousin on my mother’s side of the family has fibro. So, I have to wonder if there isn’t something to the genetic side of things. I have a doctor who accepts this as a disease and treats it as such. Yahoo!

I’ve begun to have an affinity for the Princess in the fairytale “The Princess and the Pea” because I know exactly how she felt. Before having to abandon my bed for my recliner to sleep in, there were times where I could not stand the sheets resting on my skin. I cannot hug people. Physical contact with other human beings is something I have to forgo. My husband is THE most wonderful person in the entire universe. (We’ll be married 16 years this year and he knew about the fibro when he asked me to marry him.) I have found that living at sea level (lower atmospheric pressure) helps with the fibro. However, it turned out to be an arthritic weather ”vane”. I’d rather deal with the weathervane.

I do have mid to lower back issues for several reasons. I was in a train wreck, the fibro twisted my muscles so tight they were bulging my discs and I have arthritis. I have vertigo. An ENT has tests that have tied it to fibromyalgia. And, oh yeah, by the way everyone, there is an ENT in NE Texas (or there was in 2008) that says he can definitively diagnose you with fibromyalgia with his tests. I’m not sure how, I was there to find out why, as hubby said, I had an ocean-going disease when I was land locked. Needless to say, the fibro has progressed to the point where it has invaded the nerve endings in my inner ear. If stress gets really bad or I listen to music using my over-the-ear headphones too long (more than 3 songs in an hour is too long :frowning: ) vertigo will ensue. ::: Deep breath, sigh :::

Of course, there’s more . . . with this disease there’s always more. I’ve bent your ear enough, or whatever the equivalent is for eyes, for now. Thanks for the tolerance and acceptance when it comes to this “invisible” disease. It’s in short supply these days.

Shatosa

#2

Hi Shatosa,

Welcome back! What an interesting story. It’s interesting that you mention genetics. I think it could be coincidence that your cousin has fibro simply because many people have it and it’s getting diagnosed more and more these days. One of my many ailments I had a kidney transplant and my mother donated it. A year after she was diagnosed with MS and a year after that I was diagnosed with fibromyalgia. It’s my belief that it somehow carried from her nervous system into mine. I’ve mentioned that to my pain doctor because he’s a really smart guy and he agrees it’s interesting. I just wish there was a study to prove my theory. They also say MS isn’t through genetics but my mother’s grandfather my great-grandfather had MS.

I’m sorry you were in a train wreck? I had to re-read that statement over and over again because usually we describe ourselves as being a train wreck. That sounds pretty scary. As for rheumatoid arthritis I have a friend who has junior RA and was a rare case that went into adulthood. RA is not something I would like.

A lot of people have mentioned their inability to deal with sheets and sounds, certain materials… There is a name for it. Allodynia. There are nights I can’t stand the sheets on my bed that I have to change out of my shorts and put on pajama pants. Sometimes I can’t stand those either and I have to take something to help me sleep. Sounds have always been a problem for me. When I lived with my mom she would use a metal spoon in a metal saucepan and that stirring sound would drive me mad.

Fibro is one of those diseases that you get when you either have a bunch of other crap going on or it creates more crap after you are diagnosed. I have a couple of friends who have ME/CFS (Myalgic Encephalopathy, Chronic Fatigue Syndrome). We could have it so much worse and have that disease. Both are bed-ridden one in his 30s and the other in his 20s. There are a lot of people who tell them it’s all in their heads (just like fibro). In any case I know how you feel. We all just have to take one day at a time. Deal with today’s problems and get through it and hope that the next day is better. :slight_smile:

Talk soon,

David

#3

I’m interested in knowing more about that ENT. I have thought about seeing one because my allergies are so bad, even though I am getting allergy shots now every 3 weeks, and my ears often feel like they are clogged up. My doctor has looked in them and tell me they are fine, but they don’t feel fine. And my husband is always telling me that he thinks I’m losing my hearing. I don’t think I’m losing my hearing, but I don’t think it is as good as it should be. I appreciate your feelings. I’m glad we have a place to post our feelings. I don’t get on here much, because I work full time and I’m working on my PhD. So, I do the best I can. Very gentle hugs to you!

#4

Hello Davey, thank you for responding to my post!

Yes, when I was 19, the VW compact car I was driving was hit by a 3 engine, 75 car train. I walked away from that wreck, specfically because I was driving that VW car–they’re designed for those kind of front side impact crashes, only to not be able to get out of bed the next morning. Hence the lower back soft tissue issues. As with everything else in my life, of course, there’s more to that story, but that belongs on another forum.

As for the clothing aspect of this horrid disease. . . Part of the reason I think I may have had this since childhood is the fact that I’ve always had an issue with clothing. I’ve never been able to wear cotton socks. Nylon hose/knee-highs are iffy. Also, I don’t know if this is the fibro or just a quirk, I have always had issues with my hair and how to style it. I can’t stand to have it parted anywhere except down the middle, I cannot stand to have bangs and my hair has to be behind my ears. Jeans, slacks, pants–FORGET IT!!! I’ve never owned a pair of jeans. I just can’t stand to wear any of them. Drove my mother, rest her soul, up the wall LOL. Given that, you can imagine the trouble I had with articles of clothing that go under all of that. Nuff said.

I understand loud sounds. Among other things, I can no longer go to see movies. Or go to the mall, for that matter. I have a friend who has fibro and uses ear plugs to see movies. I’m too afraid to chance it, another week-long migraine I don’t need. I also, thanks to being legally blind, am extremely near sighted with astigmatism. This causes me to be light sensitive. Another issue with seeing films in theaters.

As I said, there’s always more. This disease has the ability to mimick so many other diseases like the flu or even my arthritis and sometimes I don’t know which it is that’s “going off”. Being able to discuss it with others who have it helps immensely, so again, thank you for responding to my post! :smile:

#5

Firbohelp, thank you for responding to my post!
If my allergies were to the point where I had to have shots (can’t stand that needle!) that often, I would go see a specialist. But that’s just me.

I have this issue with my hubby also LOL We’ve discovered that I can’t hear things in the lower registers and he can’t hear things in the upper registers. And we remind each other that’s why we’re together LOLOLOL.

Thanks for the support, and gentle hugs, it’s so much appreciated. I’m greatly impressed that you are still working full time. I’m disabled and not working, have been since 2013. At one time, in my previous life, I tackled writing an e-book. Thought my “second act” would be in that field. Oh well! With the fibro fog, etc. I can’t hold much of an idea in my head, let alone develop a plot.

All my best wishes on the PhD. What discipline is it in? When do you expect to have it awarded? (So we can plan an internet party for you ::: eyebrow wiggle ::: LOL) Again, thank you for responding to my posting! :smile:

#6

You are so sweet.
Working full time is not my choice. I worry I’ll lose my job before I’m ready. My husband pushes me to continue. It’s very hard! Some days are worse than others, because I also have PTSD and generalized anxiety. So, when things are not going so well at work, it affects mind and then my body follows. I am the manager, and totally dislike complaining by my employees. I am not good at dealing with things like that. But I have to, and that gives me anxiety.
Blessings to you!

#7

My PhD is in Psychology- cognition and instruction. the last year was terrible. I was a mess. But I’m on Prozak now and that has helped me to calm down.
I hope to be finished by the end of the year.
Blessings

#8

I’m glad that you’ve found something that helps you calm down. I’ve yet to find anything that will do that without putting me to sleep. What an interesting field of study. Good luck with it and your employees. Maybe bringing in donuts, bagels & creme cheese in the mornings will lessen the griping? Hmm??? Sort of like on the commercial where everyone goes to the budget meetings just for the food. When all else fails, bribe 'em. :wink:

#9

LOL. I will definitely try that! Thank you!