ROSE RED, are you out there?

[diamondfan]

Rose!!! I just noticed in checking something out in my old thread that my post back to you had not posted. (I have this trouble sometimes, I hit submit and get up and it is not there in the thread!)

Anyway, I so do not want you to think I did not read your post and that I ignored you. You and I have a really similar situation. Except my hubby, after 5 years, is still not totally getting it. And I also get majorly triggered by stress, like Mother in Law visits.

I did get in for the consult for the sleep study and must schedule it. But do not want to take Lyrica which can have not so great side effects. But you are so right, when people see you and you LOOK okay, it is hard for them to relate. Meanwhile, I sleep two hours most nights, have pain all over, feel extremely fatigued, almost cannot walk up one flight of stairs without my muscles screaming...and get terrible headaches, have reflux and ibs and irritable bladder (and isn''t that way more than you want to know about me?)!!! I mean, I am only 42, this bod better keep it together for the long haul or else!

Anyway, wanted to say you are lucky to have hubby on board, and I hope you are feeling somewhat better. Please accept my apologies as I would never not reply to someone who was so open and caring, and I am with you, I know what you are dealing with on a daily basis.

 

[RoseRed]

Diamondfan! I''m so sorry but I just saw this! I''ve been having an awful episode lately and when I feel this bad I tend to go all hermit-like. You are so sweet to apologize but don''t worry about it! I don''t post very much but it''s nice to connect with someone who shares a similiar problem.

You know, I am super lucky in terms of the hubby being so supportive but in some ways it makes things more difficult. I really worry about being a burden and how this thing has changed our lives so much. I mean fibro is so difficult to deal with and to explain. It''s so intangable and well, weird! I mean the constant pain and then the triggers that make it worse and sometimes even impossible to function, the lack of research and answers, the horrible medicines that have such terrible side effects. All of that adds up to just plain awful. Of course, I''ve talked to him about my fears and he is always very upbeat and supportive but it doesn''t make those fears totally go away. He has a sweet joke he says that always makes me laugh-- "Whatever the mess you are, you''re mine" and says he wouldn''t have it any other way. Who wouldn''t be scared of losing a man lilke that?

(hope that doesn''t sound braggy...cause I''m not like that at all!)

I''m glad you got in on the sleep study....my doc thinks that the answer lies in sleep. But I still fight about all the meds she wants to try out--I''ve just had too many bad experiences. I just found out that Duke is starting a fibro study so I''m going to try to get into that. Thank goodness somebody is doing some research!

What is funny is you mentioned you have headaches, reflux, ibs and irritable bladder. I''ve got all of those except the bad headaches! Do you have any chronic immune problems too? I have Hashimoto''s Thyroiditis and the doc said there may be a link between an immune prob and fibro. We sound like the walking wounded and yet nobody can see how bad we feel! OK now, how weird is that?

anyway, I hope you are feeling pretty good and avoiding those dreaded triggers (like ILS)! that''s why I''m so yucky right now...visiting the in-laws about killed me!

 

[diamondfan]

My mother in law is the angel of death for me!

I too have Hashimotos but they claim it is inactive. My thyroid levels are normal but I make antibodies to my thyroid. I may try to convince my doc to put me on synthroid anyway.

I also have low testosterone and she wants to augment me with these weird pellet things that go under the skin.

I too feel like a mess. My reflux is horrible right now and I am having an endoscopy soon. I also might need an abdominal and pelvic cat scan which is freaking me out because I have to drink this nasty stuff, 32 ounces, and I get very nauseous and have terrible gag issues. Once I start feeling ill forget it!

I think there is a link with autoimmune stuff. I know many people have clusters of symptoms and they seem to go in clumps. How nice for us. The migraines are hormonal and I have had them since I was ten. Now I also get vise like headaches as I have disc issues in my neck. I have nerve damage in my right arm too. If I took all of the pill and did all of the crap they tell me too I would be non stop swallowing.

The sleep study people want to know if I have apnea which often people with fibro do. My sister says no, she has heard me sleep, so I hope she is right. He also asked if I have restless leg syndrome, sometimes I think yes as I feel a pulsing feeling in my leg sometimes when I am falling asleep.

Hubby jokes with me that I am falling apart and he will have to put me down...but honestly sometimes I feel like a total disaster and I hate it, cuz I can recall feeling great and really feeling energetic and good. Now I am like an old lady.