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Could this be Fibro???? Could this be Fibro????

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  #11  
Unread 02-01-2005, 10:17 PM
Could this be Fibro????

Dany,
I was diagnosed with Fibro 2 months after my TAH. I hurt in every joint and was so tired! At first they thought it was lupus or Rheumatoid Arthritis because I did have some abnormal autoimmune lab tests. But ended up being Fibro. It was a rheumatologist who diagnosed it. I also have chronic fatigue. I truly believe both these illnesses are actually symptoms from a lack of estrogen because my estrogen level is so very low. I have been so sick with both plus depression since my surgery that I had to quit my full-time job and go on disability. I feel like I have the flu all the time and am just ready to collapse from fatigue. My joints ache and the pain in my back is so severe I have to take pain pills. I have lots of lumps all up and down my back that you can feel. The Dr says that is common with Fibro. I'm glad you're going to see a Rheumatologist. They really haven't been able to do anything to help mine but giving a name to all the symtoms I had helped me. Good luck and keep us all informed.
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  #12  
Unread 02-03-2005, 10:19 AM
Could this be Fibro????

Hi ladies, just thought I would put my 2 cents in. I was Dx with myofascial pain (which I had never heard of ) two weeks ago. I got on the net and started looking into it. It seems that it is very similar to FMS. Sometimes people will have both. Myofascial pain also has to due with trigger points in the muscles and can be very painful and annoying. Just thought it might be something else you would like to look into, Dany. I hope that you get your answers soon, and will be on the road to good health.
  #13  
Unread 02-03-2005, 11:05 AM
Could this be Fibro????

Dani,

I am so sorry you are still having trouble with pain. You and I have talked about this before several months back, as I remember.

I haven't had much luck in pain management. I kinda just exist right now. My copays at the dr are so high that I can't afford to keep going to get my meds right. My DH is giving me a bit of grief and he really doesn't understand. With FMS, it is so important to have a good support network and I don't have that. It is "in my head". So I suffer alone.

All my tests came back negative as well. It wasn't until the dr did the pinch test. Every joint she pinched, hurt like heck. So that is how I got diagnosed. Weather drives me nuts and I am just coming off of a flare that started two days ago. I have trouble walking during a flare so I can identify with the cane. At times I have felt I could sure use one but DH would think I was carrying it too far if I did.

This FMS is so debilitating and it is sad no one really understands unless you suffer from it or know someone who does. I pray you find relief soon Dani and to the rest of you who are hurting. Gentle hugs,
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  #14  
Unread 02-03-2005, 08:38 PM
Could this be Fibro????

Sorry for not coming back to this thread until now: between being tired, life and DS's hogging of the PC, I haven't had much on-line time. And it doesn't help that my allergies are now flaring.

Thanks for all the information. I'll be sure to print this thread before I next see my doctor (guess I'll have to schedule time in for that ). And I'll look into the myofascial possibility. My "problem" is that, these days, I only think about doing something about it when I'm flaring. While I do have some pain or other almost all the time, most of the time it is very bearable, and I let it go. When it flares, I can't get a doctor's appointment and I really don't feel up to waiting forever to be seen in a walk-in clinic So it really is a dreadful vicious circle.

((((Judy))))) You made a whole lot of sense to me While I know that a good rheumy can diagnose you even when you're not flaring, it's soooo much easier to explain how you feel when you're flaring. And, sometimes, just from the way you walk or hold yourself, it gives the doctor a clue of just what you're going through. That's why I really should bite the bullet and go to the doctor's when I'm flaring!!!

Dear s, I do hope that, one of these days, doctors really understand just what these conditions are and how much of a toll it takes on those who suffer. I consider myself one of the lucky ones: right now, most of the time, I'm doing ok and can function really well. I know that others are not that lucky!!!
  #15  
Unread 02-03-2005, 08:47 PM
Could this be Fibro????

Dany,

I didn't have a flare when I saw the doc. She still did a pressure test and at the points where she pressed, they were sore. For me they stay sore even though I am not having a flare. tell the doc your symptoms and see what he/she says. RA docs are trained for this stuff and they will know just by what you tell them. Good luck andlet us know what is going on. Feel free to pm me whenever or if you would like to just unload. Take care,
  #16  
Unread 02-04-2005, 08:10 AM
Could this be Fibro????

(((Dany)))

I really identified with your comment that you have some pain all the time, but its tolerable and you don't think about it unless its really severe. Mine's not joint related, its all pelvic. Just saying, I think I understand where you are coming from on this.

We don't want to be sickly. I am a caretaker. That's just my personality and it drives me CRAZY to need help. So, I go in this big denial thing in between pain episodes. I almost cancelled my appoint with the endo specialist because I was feeling so great and it had been about 6 weeks since a severe pain episode and I actually consdiered that "hey, maybe its gone now!" You know, if its not incapacitating, I tell myself "its nothing". Well guess what the next week ........OUCH.......bloody heck... sidelined!

In hindsight, my denial has only delayed treatment and caused perhaps some unnecessary suffering.

I think you are handling your situation much better than I have been handling mine. Keep after it. You will find the answer and an effective treatment!

  #17  
Unread 02-04-2005, 10:24 AM
Could this be Fibro????

Hi ((Dany)),
I know what your saying in it being hard to describe symptoms when they arent as bad or your not in a flare

What has really helped me, is keeping a pain journal that I can take to my Drs appt...it really helps me in relating my pain, frequency, degree of it & more!
The hardest part for me was remembering to write it all down, lol. I found that picking a time of day, same time every day and setting aside 5 mins helped me establish a routine then a habit of doing it. For me, since my pain is worst 1st thing in the morning, I do it then while having my 1st cup of coffee. Sounds like you could really benefit from doing something similar

I found this I thought could make it alot easier in describing your pain also with getting a proper dx

Fibromyalgia and Chronic Myofascial Pain Syndrome Worksheet:
  Quote:
You will find this a helpful tool for tracking your FMS/MPS symptoms and for communicating them to your doctors, family, and friends!

http://www2.rpa.net/~lrandall/fmslog.html
I printed something similar off and put them in a 3 ring binder...I bought a 3 hole punch so that it was easier to keep them organized and the pages could be accessed better. Since mine was growing rapidly...I bought some tabbed organizers so that I could flip to a week or month while at my Drs appt.

  #18  
Unread 02-04-2005, 08:27 PM
Could this be Fibro????

Thanks for the insight (((Chris))), (((Michelle)))) and (((Sheri)))

(((Michelle))) I don't know how many appointments I either cancelled or didn't show up for because I figured I was miraculously cured You're right: by denying it all, we're just delaying the healing process.

(((Sheri)))) Thanks for the link to the FMS/Myofascial worksheets. I'll be sure to print them out. I like the binder idea
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