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debmwrn67

New member
Joined
May 18, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
09/2014
Country
US
State
FL
Hello Everyone,

I'm so glad I found this site! I'm starting to lose my mind!

I have been suffering with multiple aches, pains, numbness, stiffness, fatigue, mood swings,confusion, and in total fog. I could go on... Too many to list all. I had thought something was wrong about 3 years ago, but just kept telling myself I need to eat better and exercise. But even when I did, I would sometimes feel even worse. Finally over the past year, it got so much worse! I use to have more good days than bad, now it's the other way around.

I've been through 5 doctors and some made me feel like I was a drug addict that just crawled in off the streets. I guess there are plenty of them here in FL. But I spend many times walking out holding in my tears until I get in my car. Then cry for days! I finally found a doctor that believes me and ran all kinds of test to rule out every possible illness. Finally, she read up on Fibro and gave me the the pressure point exam and questioned me on all my symptoms. Hooray right! Well, now I'm back to square one again.

Well, she started my on Cymbalta @ 30 mgs. It took about 6 weeks but I finally started to feel some improvements. The stiffness and numbing went agway, aches lightened up some and I started to sleep better. But when I had my bad days, I was still in bed. So she upped it to 60mgs and after about a week, everything started coming back. I read the side effects, they are the same as Fibro. I continued for 2 months hoping they would subside, but just kept getting worse. So my Doc decided to dropped me back down to 30mgs, and then I had withdrawals and feel worse than ever! I've been out of work for a week and finally returning back in two days. (I miss enough work as it is). She gave me a hard time claiming that I shouldn't be having such withdrawals because I haven't been on it long enough and then tells me I should go to counseling and start exercising. Don't get me wrong, I love my Doc, but she seems to be clueless about Fibro. I spent much time reading about it and thought she understood it too. And today, I left her office crying and frustrated.

Can someone please give me some input on where I should go now? I've already started searching for a Doc that has some experience, but haven't much luck finding one. What type of Doc should I be looking for?

Thank you for taking the time and reading my message. I will go and read others now with hopes of learning more about this.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
Sorry that you're having a tough day. Actually, she gave you a couple of good suggestions to help with pain. I know it must have felt like she was just flipping you off. Gentle, measured exercise is good for fibro. Not a marathon or anything, but a good walk can help with pain and mood. Start small and add a bit each day. The key is to not overdo.

As far as seeing a counselor, if you can find one who specializes in chronic pain, you can get some good tips for managing your response to pain. I see a counselor for a "tune-up" every time I get stuck or feel myself slipping. I think we often think that seeing a counselor means "it's all in your head." Quite the contrary, a good counselor can help you sort through the pain and fog and find solutions that work for YOU so you can manage your pain. It won't take away the pain, but it will help you get through the day and the week in better shape.

Rheumatologists and pain docs often treat fibro, though they may get you on a regimen and turn you back to your primary for on-going care. Is Cocoa anywhere near the University of Florida campus in Orlando? I think they have a medical school and likely have a clinic/medical center. Give that a try.

Good luck and take care.
 

PythonPlay3

Active member
Joined
Sep 16, 2014
Messages
59
Reason
DX FIBRO
Diagnosis
06/2005
Country
CA
State
AB
I kind of when through the same when I started feeling symptoms of my doctor (then) would look at my funny. He kept insisting that my pain was my depression or my arthritis acting up. But this pain was way different. One day I woke up in such extreme pain I couldn't walk. I had all the tests done and I know I have nothing else wrong. That is when I was referred to my current doctor. Her office specializes in treating fibo. I would say the most important thing that you have to learn is - DO NOT over due it and do not feel guilty if you can't do it. Fibro will go up and down - but everyday you need to ask yourself - how am I today. You know as soon as you get out of bed and walk to the bathroom what kind of day it is going to be. Plan around how you feel. Don't push yourself that is the worst thing. I have had to miss important parties, celebrations, etc because I physically couldn't go do it. And that is life with fibro. Look up the Spoon Theory online and you will get what I mean. And yes when you feel you can walk it does help with pain. Counselors are good for you because they help you deal with the frustration you will have, give idea's on how to structure your life, and really give you a support that maybe your own family can't give you because they really don't get the illness. I see one every 6 months just to have a check up. Some meds will work for you, some will not. READ READ READ from what others post and say here. It will help you to understand what you are going through and maybe what you haven't yet. It is also a comfort to read that others are having the same issues as you are. There will be days you feel like you are loosing your mind- and we get it.
 

debmwrn67

New member
Joined
May 18, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
09/2014
Country
US
State
FL
Sorry that you're having a tough day. Actually, she gave you a couple of good suggestions to help with pain. I know it must have felt like she was just flipping you off. Gentle, measured exercise is good for fibro. Not a marathon or anything, but a good walk can help with pain and mood. Start small and add a bit each day. The key is to not overdo.

As far as seeing a counselor, if you can find one who specializes in chronic pain, you can get some good tips for managing your response to pain. I see a counselor for a "tune-up" every time I get stuck or feel myself slipping. I think we often think that seeing a counselor means "it's all in your head." Quite the contrary, a good counselor can help you sort through the pain and fog and find solutions that work for YOU so you can manage your pain. It won't take away the pain, but it will help you get through the day and the week in better shape.

Rheumatologists and pain docs often treat fibro, though they may get you on a regimen and turn you back to your primary for on-going care. Is Cocoa anywhere near the University of Florida campus in Orlando? I think they have a medical school and likely have a clinic/medical center. Give that a try.

Good luck and take care.

Hi There,

Thank you so much for the advice. After doing so much research, I have realized doing a little exercising a day is supposed to help, it's just getting myself to do. On good days, it's easy, but bad days... Ugh...

OK, I will look more into counseling. I do work in Orlando which I'm close to UCF, but I live an hour away and would much rather have all my doc's close to home instead of work. But I will definitely do some research on the counselors in my area. I honestly didn't know that some counselors could help with managing the pain. Plus, I really would like a job closer to home as well, but do to the lack of brain function, I can't even imagine going for an interview and learning a new job, I already have a hard enough time remembering my current one...lol A little humor there... :lol:

Thanks once again for responding, you really helped me!
 

Chihuahua Mom

New member
Joined
May 26, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
03/2015
Country
US
State
NC
Hi - Can anyone help me learn how this works please!
 

debmwrn67

New member
Joined
May 18, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
09/2014
Country
US
State
FL
Hi There,

I'm so thrill that I have had, not one, but two responses. I'm so new to the on line support group and so glad they do exist! I'm still learning how the site works, so if I'm not doing something right, or forgetting to, please bear with me!

But I can't tell you how much I do appreciate your response! I've only heard of people who have Fibro, but never actually met, or spoken to someone to share the experience with. I do get very frustrated on days that I just can't do anything. I've always been the type to set goals and schedules for myself, so I can get things done. And now with fibro, for at least the past two years, it's not always possible to set a schedule and it has frustrated me to no end!
So... I think counseling would be good for me in many ways! I'm just stubborn and ignorant with this... whatever it is!

Again, thank you so much!
And please feel free to share and give me any advise!
Hope you're having a good day today!
 

Checkers

New member
Joined
Jun 15, 2015
Messages
4
Reason
DX FIBRO
Diagnosis
05/1997
Country
US
State
PA
I just want to add, Ive had fibro many years. I take cymbalta 60mg & lyrica 250mg every day, in addition to a muscle relaxer, arthritis medicine, and narcotics for break-thru pain. I became an RN at 55yrs old, so that I could understand what was going on. Start keeping your medical records together, so you can remember what Dr you saw when, what they prescribed, how long you took it, and how it worked for you. Exercise seems to help the best, and a warm pool has been the best starting point for me. Dont give up, keep learning, keep moving & take it easy on yourself. Ive had good years & bad since I was diagnosed, but you have to keep picking yourself up and try something else.
 
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