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Cindykay

Active member
Joined
Apr 10, 2015
Messages
39
Reason
DX FIBRO
Diagnosis
01/2015
Country
US
State
Ohio
Hi all - I've been away for too long! I keep forgetting about this wonderful community. Thank you, fibrofog!

I am confused about the differences between fibromyalgia and chronic fatigue. 15 years ago I had an undiagnosed illness I now believe was Chronic Fatigue. 3 years of utter exhaustion and Drs. Saying they didn't know what was wrong with me. I got better, mostly due to dietary changes. Two years ago I started experiencing a lot of pain, fatigue, temperature sensitivity and brain fog, and was quickly diagnosed with fibromyalgia. My pain is marginally better with the drugs and supplements I'm on, but the muscle weakness and fatigue I associate with my earlier illness is back. Is it all Fibro or do I have Fibro AND chronic fatigue? Would a diagnosis of both help my chances of receiving disability? My Rheumy says to exercise to combat the fatigue; I get that but it is soooo hard when I feel so wimpy. Any thoughts?
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
There are so many different trains of thought on this. My personal understanding is that CFS also known as ME and fibro are all part of the same family of illnesses with more pain with fibro and more fatigue with CFS/ME.

If you watch some videos on youtube on both you will get the jist.

Also different doctors use different terms and call it all CFS or ME or Fibro so it is very confusing.

I would have thought a diagnosis of fibro that is now recognized as an illness in its own right would be enough for disability as the fatigue and muscle weakness in fibro can be just as severe as with CFS/ME.

Exercise has never combated my fatigue.I always exercise when i can but when the fatigue is really bad my body is so heavy and weak i can barely stand long enough to refill my hot water bottles or get a drink.

I am not kidding when i say it is impossible to push through and i have tried when i have been so frustrated lounging around bored out of my mind.

Exercise is important and we are all different so only you can judge if it pushes your body too far some times when the result will be huge payback in terms of days or weeks to recover and ridiculous pain levels.

Welcome back...lots of people i was communicating with have been off this site for a while.
 

Nexi

Active member
Joined
Dec 1, 2015
Messages
90
Reason
DX FIBRO
Diagnosis
03/2002
Country
CA
State
Northwest Territories
Willow is correct about the exercise bit. That is what put me in my current situation. I bought the Bowflex Max 5 and I was so excited because it is low impact plus being in the Arctic circle I just can't go out walking whenever especially with my medical conditions. So silly me, I started out by doing their 15 min "max workout". DUMB!!! That was over two weeks ago and now I am on continual demerol shots just so I can sleep. Now, I just started that because my regular meds just weren't cutting it. But this could have all been prevented. When doing any exercise, listen to your body. If all you can do is walk to the bathroom, ok. I'm not kidding. Set reasonable goals. So, yeah when doctors talk about exercise being the cure all for exhaustion, it makes me very irritated. Please be careful. XOXO
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Thanks for confirming my thoughts Nexi...sometimes i think i am the only one who just cant exercise much of the time as i know some folk on here are different and they can push through and walk off the fatigue.

It just goes to show we really are all unique in our experience.

You are not wimpy Cindykay and also this illness can change and new patterns of tolerance are created...for me i have been stuck for months with severe pain and unable to hardly get around...but for the previous 7 years with fibro some days that would happen, but often i could walk for about an hour do my house work by pacing and resting and do light bits and bobs in the garden on some days.
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
429
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
Washington
I have yet to hear of someone that has fibro, not having chronic fatigue.

I am so sorry you are going through the severe fatigue. I had a particularly rough year last year and didn't realize it at the time, but my daughter missed or was late many days because I was unable to get out of bed. When my foggy brain realized how bad it had been, we had to regroup and put the burden on my then 13 year old. She was given an alarm clock and had to make sure I got up to get her to school on time on many occasions. This school year has been better and I've learned to ask for help from friends and parents. Pride went out the window.

I also suffer from neuropathy so am unable to walk regularly. Most mornings is like walking on razor blades as it is. Makes it tough to work out, but I still vow that I'm going to do something! I bought these 10 minute workouts last year. Sounds pathetic, but I think I'm regrouping enough that I'm hoping to start doing them a few days a week to start. One thing I have learned over the years is start with a little toe. Don't jump in with both feet or you've just set yourself back......for me, way back.

You mention applying for disability. Two nights ago I posted a thread about how I was successful in getting approved the first time. Please find it and read it. I believe my actions and the suggestions from a very kind attorney helped me to give a clear picture of my ailments and diseases. While overwhelming at first, once I got in the groove and the right mindset, I was able to gather enough info and get the support of my physicians and counselor to be awarded disability. It is well worth it and if you have children, you get 50% more for them until they turn 18 or graduate from high school. Any funding is better than none.

Hang in there.....It has been months since I have been on here, but I plan on being around so don't hesitate to ask questions.....Gentle hugs...
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi there! Getting diagnosed with both might offer a small advantage and consideration in front the disability board, but I'd not count on it. They seem to be really fussy, even when a lot evidence exists... sadly. As for your other health issues, I hope you have gotten checked by a neurologist, and have gotten MRIs done, because symptoms like the ones you mention require a visit to the neurologist.
 

hisolblonde

New member
Joined
Jan 31, 2015
Messages
9
Reason
DX FIBRO
Diagnosis
06/2008
Country
US
State
Maryland
Hi All, I was diagnosed 6 yrs ago and it had been quite the battle I have been through every medicine on the market and I am either allergic or have a reaction to it. Well 2 yrs ago a dr came into my life and changed it he put me on a Butrans patch and oxycodone but I was still very fatigued so he put me on phentermine its a diet pill and it had me up and going for about 8 hours and now this dr left and I had to change pain clinics and now im back to square one they want to take me off of all my meds and wont give me the phentermine it has me so frustrated that the drs think they can play god with your life like that. If something is working why in gods name do u want to try me on the same things ive already tried! My fatigue is back and im still taking pain meds but im not up agin doing my everyday things again, im bavk to vrying all the time again cause they just dont understand.
 

sureimsore

Distinguished member
Joined
Apr 14, 2016
Messages
190
Reason
DX FIBRO
Diagnosis
03/2016
Country
us
State
XO
If something is working why in gods name do u want to try me on the same things ive already tried! My fatigue is back and im still taking pain meds but im not up agin doing my everyday things again, im bavk to vrying all the time again cause they just dont understand.

Hi hisolblonde, sorry to hear about your setback and frustration. Although you were getting benefit from the phentermine (which I never heard of before, had to look it up), it does look like a strong stimulant similar to amphetimine. Long-term use may do you more harm than good, as it can cause arrhythmias and other things that can effect your heart.
From wikipedia: "Phentermine is a prescription that helps aid weight-loss and is designed for short-term use with a combination of exercise and a healthy diet."

I can just imagine your disappointment, but maybe take a "wait and see" to what pain management has to offer you long term.
 

oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
Yeah, we need to readjust and this takes time, we need time to build a new perspective on our new condition.
 

Nurseellie

New member
Joined
Jun 1, 2016
Messages
2
Reason
DX FIBRO
Diagnosis
11/1999
Country
Uni
State
United States
Hello, I am very new to the group but was diagnosed in '99 with Fibro. I find the pain and muscle WEAKNESS makes it hard to walk any distance let alone exercise. I find just doing a little more than I usually do when feeling good makes me sleep for the next day or two. My husband has observed this also when he sees I can not keep my eyes open. Yes, I know you can have CF with Fibro. I was given disability without issue 3 yrs ago. I don't know if that was due to my age or not 59 1\2 when applied. I was a homecare nurse and found with the fibro fog and memory loss I had troubletaking orders.
 

oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
Those are closely connected that is why this is a life changing disease, we are always tired.
 
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