FMS progressive or not?

[Monkey1mill]

Hi all. Haven't been on in a while. I have fibro for 20 yrs and OA for about 15 yrs. Drs say fibro is not progressive. Last time I went to dr  my hands were drawn into a claw shape for several days.  I had this before and it lasts for 3 to 4 days at a time. Dr asked what was wrong with my hands. I told him probabaly OA. He checked them and said not OA but fibro. He then stated that my fibro was at severe level. Also said only severe fibro patients had hand problems and only a tiny percentage of them had it but I was one of tiny percentage. Second question went to family dr to ask about heartburn meds because I thought chest pain was due to heartburn. He asked me to describe pain and when I did he seemed alarmed. He said he was almost positive pain was angina. He then did EKG, said it was abnormal and set appt with cardiologist. He did nuclear stress tests. My heart is fine. I asked why angina and abnormal EKG then. He said caused by OA & fibro. Has any one else had this problem? If fibro is not progressive why am I being told by dr that fibro is a very severe level?

[VaBreeze]

No one could possibly be 'more bored' than the persons isolated with these illnesses.  Others don't seem to be concerned until they are in our shoes.  Like one member mentioned previously...you find out who your true friends really are.  

You know how I feel about the politics!!!  &&**@## and (%$##@).  There, I feel much better now, lol.

[PlateletGal]

"I believe that much of the frustration comes from not being believed,"

B-I-N-G-O !  If I told my friends that I had cancer, they would immediately be at my door, offering their support. However, when you have an invisible chronic illness... friends get bored after awhile, so you have to be careful not to say much about how you feel. It is very hard and what is even worse is watching the politics involved with your illness. Don't support physicians who don't support you... that's my motto !

[VaBreeze]

Monkey1mill - We do understand.  I believe that much of the frustration comes from not being believed, being told it's psychological and the physicians who treat us as hysterical women.  It's tough living with these illnesses...they have no idea.  God forbid that it hits one of their loved ones before it's taken seriously.  

I don't know about everyone else, but I have my pity days.  It may be once every so often, but it hits hard (not being able to be included in things or all of the sacrifices we have to make).  I'm not ashamed to say I cry and mourn my losses.  It's perfectly human and part of a process of healing.  It's nice to have the forum to come to and know that we will get support and understanding from others who can relate.

Angel - I'm sorry about your confusion with the appt.  Don't feel too bad...i've done the same thing.  :-(  I think the worst part is how much effort it takes to get ready and even make an appt., then to find that out...grrrrrrr.  Hope you can reschedule and she gets it right next time.

*Breeze*

[kiddthekatt]

  I am so sorry that you are going through the depresion, frustration and pain of this disease all alone. Darlin, don't worry about being a cry baby, believe me you are not alone. This forum has been a God send for me. My family are troopers and have put up with so much out of me this past year and a half, but I am very fortunate in that score. Never feel like a loser, this disease has no pity on anyone, and all we can do is the best that we can, don't push yourself or you'll be dead on your feet, you know how that is.

  Right now I am fuming mad. I got dressed and went to see my Rheumy today and come to find out, my appointment was yesterday and she had given me the wrong date. By the time I got home I was so angry. So, I went to my room and sat while it was quiet and settled down. I have to remember that we all make mistakes. Take care of you.

gentle hugs
Angel

[PlateletGal]

I think that is why a support forum is vital. We need support and we also need physicians here who understand these "syndromes" "(?).

I hope everyone here checked out the Q & A Session with Prof. Nicolson. He's agreed to be a MedHelp regular and answer questions for us every other month in the autoimmune diseases (expert) forum.

[Monkey1mill]

Thanks all. I appreciate ya'll responding to my ? Fibro progressive or not. I don't want to be a crybaby about this fibro but none of my family or friends understand the 24/7 pain, depression, inability to do the things I used to and most of all the DARN FRUSTRATION of feeling like a loser who can't cope with what I need to be able to do. Ya'll keep me sane by understanding my problems (wish those around me would). Sorry I haven't been on lately but it has been much worse lately & hard to type. I am sending my prayers and best wishes to all in this forum. May we all be blessed with less pain, fatigue and fibro fog. Gentle hugs to all.
Monkey1mill

[VaBreeze]

I know it's progressive...despite what the physicians say.  I have had this since I was a teen and it has certainly worsened.  Of course, since it is believed that these illnesses are caused by underlying bacterial or virual infections...if left untreated they are going to become worse.  

I am also one who fell and became disabled.  I have experienced balance disorders since I was a teen. Also, after all the surgeries I endured my health has not returned to the state that it was previously.

I can't speak for the EKG results.  I have had several times where I had chest pain so severe that it stopped me in my tracks.  If I were bending down I would have to stay that way until it eased up...otherwise I could not move and even breathing was difficult.

I'm sorry you having such frustration and pain.  I understand how you feel and how many questions come up about it all.  Get better soon.

[PlateletGal]

I believe that fibromyalgia can be progressive and is for the majority of people who live with this condition. I form my opinion based off Professor Nicolson's (and others) research on bacterial infections in fibro patients and from personal experience. I worked with people who have fibromyalgia... one of them started having problems with her kidneys. Another, fell down and injured herself. After that, her fibro symptoms were worse and I think she's on disability right now.

Anyhow, one of our MedHelp members had asked Professor Garth Nicolson the same question. Here is the link to this discussion and Dr. Nicolson's response.

And just to let you know... Dr. Nicolson may be returning to MedHelp soon ! Stay tuned for more details  ! ; ^ )

http://www.medhelp.org/health_pages/Fibromyalgia/Q--A-Session-With-Dr-Garth-Nicolson-10-6-08/show/468?cid=39

[fibrotj]

I've read, and been told, that Fibro is NOT progressive.  On the other hand, I just read where if you've had it for many years, it can be more severe.  Now, that sounds like a contradiction in terms, if ever I've heard one.  So, makes absolutely no sense to me.  I CAN tell you however, that I've had Fibro for over 20 years...actually, I think I began getting it during my late teens...and mine is definitely getting worse!!!  I started having numerous neurological symptoms 2 years ago...and have been tested for everything under the sun....only to come back each time saying..."Well, it HAS to be the Fibro."   Read my post that I just finished entitled "What Fibro REALLY is!"  ;)
~tj

[kiddthekatt]

Good morning;
   I feel for you I really do. I also have a lot of pain and severe bending in my hands.My Rheumy told me that he thought that the RA was working overtime, but I went in yesterday and seems that my RA isn't the culprit. Xrays show that the RA is very mild, and he told me that the fibro was causing my hands to cramp up and hang.( whatever the hell that is)

   Some doctors claim that fibro is not progressive, but my Rheumy says that it is. I tend to believe him. I know that mine has grown prosessively worse this past year. Until these doctors can get it together and agree on something, we have a long fight ahead of us. I was totally disappointed yesterday. After all of the xrays taken I don't know anything more than I did before. Figures huh?

   I do hope you start feeling better.

gentle hugs
Angel