New to the group here and need advice

Hello my name is Barbara and am new here. I have been diagnosed with FM since 1991 but I believe I have had it my entire life. When diagnosed with this awful condition I just had the pain stiff muscles in my neck and back, now at present time there is not one part of my body that is not affected, my back, neck, head, legs, feet, everything is stiff, sore or aches. It is so extreme that I cry a lot from the pain.

Now I have new worries for the past few years with the symptoms getting much worse this past year I have been having difficulty breathing. It feels like any sudden movement, or just sitting still it feels like my heart is pounding then I have to take a really deep breath and exhale very slowly this happens over and over. I take care of elderly mother who had heart surgery for a tumor 4 months ago and went through a rough time with her and my condition going haywire at the same time, she was in serious condition and after leaving her at the hospital and going home I could not breath I tried taking my ativan and still can not catch my breath so I got into the car and went to the ER where they took x-rays and did a ekg and took some blood. It takes a lot for me to go to the ER in fact I never have been, I don't have medical insurance so I rarely can see a doctor for my condition I tried going to my local health clinic and they told me the don't treat fibro so I just sit her suffering wondering why my breathing is the way it is. The ER doctor told me I was having a panic attack well that is not so this happens every single day and everyone notices it.

Right now I am on disability with no health insurance can't even afford it and do not know what to do. I have a primary dr. but he does nothing for me.

Please tell me these breathing symptoms are signs of Fibro this did not start happening to me until a few years ago getting worse this year. Sorry if I am rambling everyone knows FM does that to you. One symptom that makes me really laugh is when I am walking and suddenly walk into a wall, it makes me hysterical because I feel the force of the pull but can't avoid the all, so that does put a smile on my face strangely enough.

Any advice will be appreciated.

Barbara

Post Edited By Moderator (Acheybody) : 9/23/2012 9:54:11 PM (GMT-6)

Thanks SB

I am on SS disability, but I know its not anxiety this symptom happens everyday and when I bend down and stand back up I lose my breath. The clinic I went to did the lung testing and that all came back negative, the ER doctor did tell me also it could be a symptom of FM.

I use the Ativan to help me sleep, I only take it at night so I can get a couple hours of sleep the only other meds I am on is Tramadol which I don't take because it does not help me with the pain.

Unfortunately I cannot make any Dr. appointments I do not have medical insurance therefore I am stuck as to what to do I tried the free clinic and was told they do not treat FM but they did do the lung function tests which were alright. Also, my chest is sore with this as well.

Thanks for the reply I do hope someone else has this symptom as it is concerning me. Have fun walking the pup, I have three and they hate walks.

Hi Joy
I believe it takes two years for Medicare to kick in, once you are approved for disability.
Barbara, I am certainly not a medical professional but I have been on this board for years and have read many posts and I wonder if what you describe could be something related to the chestwall that makes you feel like you are being constricted and makes it hard to breath and is painful? Of course, my fibro brain is causing me one major brain fart right now and I simply cannot think of the name of the condition...geez, it's a long word...oh man, hopefully someone else will come along and fill in the blank for me. I'm so sorry, I was really trying to help...I'll jump back in if I think of the name...
take care
Miriam

Barbara,

Welcome from me too! You have landed in a great place for support here. As Snowbunny said, we're not medical professionals, but we really do care about eachother.

I have tachycardia sometimes (fast-beating heart) and often can't get a deep enough breath. It sounds like what you are having is very similar. This has been happening off and on for years; as a matter of fact, I've been bothered by this a lot over the past week. Nothing has ever shown up on a lung function test or xray or cat-scan or anything else.

I've even undergone a nuclear stress test twice, spending big bucks and absorbing enough radiation to make me want to weep (when my doc told me just HOW much!) and now, I just say "this too shall pass," and try not to worry.

Fibro can cause the strangest symptoms, so I guess why not this too?

By the way, I edited your first post a little, just because we have kids as young as 13 on these boards, so we have to be careful. Thanks for understanding.

My dad was given Ativan in a nursing home, and it made him very paranoiid. They were trying to calm him down (not that he need it - grrrr - but it had the opposite effect. You just never know!

Debbie

Hi Barbara, I'm so sorry to hear what you are going through. I suffer from panic attacks and depression. I know that when I am going through the pains associated with fibromayalgia it makes the panick attacks worse for me. Everyone is diffrent in how fibromaylagia effects them. It sounds to me like you are under a great deal of stress which not only makes fibro worse but can easily bring on panic attacks for some. I can only recommend that you talk to your Dr about the anxiety hopefully your Dr will help you that's what they are there for even though some really don't seem to know what to do. I hope you can get some relief and I wish you the very best of luck!!!

jenc318 said...
Hi Barbara,

I think I may have experienced what you are describing once before. I was laying on my back in bed then went to roll over onto my side and I got slammed with this feeling like I was going to have a heart attack or something. I felt like the breath had been completely knocked out of me and my chest was throbbing. A few weeks later the same thing happened but not as extreme. I went to the ER anyway and they did labs and an EKG and they couldn't find anything. They said I had strained my chest wall so I wouldn't be surprised if I had that costo-whatever disorder someone else had described. I can see why people might think it is a panic attack. I still get chest pains, which I do think are aggravated by stress but I don't seem to have any trouble with my lungs. Depending on where you live you may be able to get some independent insurance. I know that here is Mass there are some that you can pay a premium out of pocket. Darn this economy and lack of healthcare!

Thanks for the help I have no chest pain with this sometimes soreness of my ribs, I was talking with my mother yesterday and she remembers me starting with these symptoms as long as three years ago, they just now have become worse. The medical care in this country is bad, I wish they did not take pre existing conditions into factor then everyone can afford insurance. All I can do is take each symptom day by day and try and make it through. I thought I would go to the state fair this weekend but its a two hour drive and just going up to the garden center to buy pansies just wiped me out so I am not going to risk it. Fibro takes the fun out of life, tired of being a vegetable never thought I would ever be this bad. lol