Chronic Fatigue evolving to Fibromyalgia?Update - It was pneumonia

[arminnie]

Update post #12. Has anyone had any experience (first or second hand) with this? I know that CFS and FMS are often considered the same disease but with different symptoms.

I have CFS but have had way more achy joints lately. I know there are specific CFS/FMS boards on the web, but my experience with them has often so negative.

I prefer being here talking about dis - ABILITIES. I love the positive attitude on this board.

I know I will be lucky if this is the worst thing I have to have. I personally nursed my mother through terminal cancer so I sometimes feel like a wimp because my main complaint is that I am tired and achy. I'm going to be 60 in a matter of days so what else is new.

I've so far avoided an ECV because I often travel alone (or with others who are not exactly speed demons). Now I'm having trouble sitting or standing - lying flat on my back or stomach helps the most for my back pain.

Thanks for listening.

 

[Schmeck]

arminnie, I don't have any experience with either disease, but I noticed your RIP for your dog, and wanted to offer you a cyber~hug! (((arminnie)))

 

[twinmom108]

Has anyone had any experience (first or second hand) with this? I know that CFS and FMS are often considered the same disease but with different symptoms.

I have CFS but have had way more achy joints lately. I know there are specific CFS/FMS boards on the web, but my experience with them has often so negative.

I prefer being here talking about dis - ABILITIES. I love the positive attitude on this board.

I know I will be lucky if this is the worst thing I have to have. I personally nursed my mother through terminal cancer so I sometimes feel like a wimp because my main complaint is that I am tired and achy. I'm going to be 60 in a matter of days so what else is new.

I've so far avoided an ECV because I often travel alone (or with others who are not exactly speed demons). Now I'm having trouble sitting or standing - lying flat on my back or stomach helps the most for my back pain.

Thanks for listening.

I was diagnosed with CFS in 1991 (before I had children!). I did have to quit work at that time because I could not function. The Fall of 92 I had twin boys and 16 mos. later I had another son. Those early days with babies and then toddlers were difficult. The latter 6 mos of 1995 I had a hard time getting out of bed. By 1998 I was better and went to work part-time until 2001 when I was in severe pain. Diagnosis: Fibromyalgia and I have been unable to work at a paying job ever since.

We've been to Disneyland in 1999, 2002 & 2003
In 2003 we stayed at the Disneyland Hotel and rented an ECV from one of the local companies. The ECV helped me to be able to stay in the parks longer and enjoy our vacation better.

We are doing Disney World and Disney Cruise in October and I don't know about ECV's this year. Although I still have problems I am better and I'm working out at the YMCA to hopefully get more stamina. I'll just have to play the ECV situation by ear.

I know sometimes it is very hard having invisible disabilities (or even admitting we have them) especially when other people don't understand. We just need to understand that the naysayers are often clueless and we have to do what is best for us. I say if renting an ECV will make your life/vacation more enjoyable, then by all means go for it!

 

[granball]

I don't want to get to medical here, but I was diagnosed with fm/cfs many years ago, and I am convinced that many if not most cases are really a form of one infection or another - lyme, mycoplasma, etc. Please read here:

http://www.successfulhealing.com/Lyme-Disease-Specific-Wellness-Plan.htm

 

[Haley Whippet]

You may want to check this thread
http://www.disboards.com/showthread.php?t=1155555
It is about Fibro.
Deb

 

[bumpysheep]

Has anyone had any experience (first or second hand) with this? I know that CFS and FMS are often considered the same disease but with different symptoms.

I have CFS but have had way more achy joints lately. I know there are specific CFS/FMS boards on the web, but my experience with them has often so negative.

I prefer being here talking about dis - ABILITIES. I love the positive attitude on this board.

I know I will be lucky if this is the worst thing I have to have. I personally nursed my mother through terminal cancer so I sometimes feel like a wimp because my main complaint is that I am tired and achy. I'm going to be 60 in a matter of days so what else is new.

I've so far avoided an ECV because I often travel alone (or with others who are not exactly speed demons). Now I'm having trouble sitting or standing - lying flat on my back or stomach helps the most for my back pain.

Thanks for listening.

You should google elher-danlos syndrome III and hypermobility syndrome. A lot of people with EDS have chronic fatigue and there is reasearch now showing that a subset of people with achy joints have BJHS or EDS.

If you have spefic joint pain I would look into hypermobility issues before fibromyalgia.

SORRY I want to edit this to say that a subset of people dx'd with CFS actually have EDS of BJHS.

 

[arminnie]

thanks for all of your responses. More to discuss with my doctors. Just got back from ER because I was coughing up blood. If it's not one thing it's another.

 

[JenJen]

I was Dx with CFIDS at 12 after a bad case of Mono. about four years later I was diagnosed with fibromyalgia. I also have hypermobility syndrome with heart vaulve problems.

I know they are all connected but I am not sure how.

(((((((((((((((((hugs)))))))))))))))))))
Jen

 

[arminnie]

I turns out I probably have pneumonia (let's home that it is not a tumor). My pain was so bad and got worse the longer I sat or stood (was upright). Lying down was the only relief.

Now I'm thinking that it may have been the pressure on my lungs. I am taking levaquin and I seem to feel better just a day later. I've been up for several hours and am not in horrible pain yet. We were supposed to drive to New Orleans today, but that's not happening.

 

[JenJen]

I hope you start feeling better soon
(((((((((((hugs)))))))))))

 

[spiceycat]

so sorry!

hope you do feel better.

I know how much you miss your baby.

I need to do that for Spicey.

if a scooter will help you get one.

I know you say your friends are slow - but sometimes the only thing to do is go back to the resort.

are you staying on WDW property to make it easier to go back to your room to rest if you need too.

if you are staying at WDW hotel then they have free wheelchairs - these are not ECV by any means - but it might work for you.

 

[arminnie]

The day after the OP I ended up in ER (coughing up blood), and it turns out my back pain was from pneumonia. I wonder how long it would have taken me to figure that out.

The pain across my back was from pleurisy with the pneumonia. I can't believe I suffered as long as I did. That's the problem with never feeling great - I can't even tell when I am sick.

Two rounds of antibiotics later and use of my rescue inhaler 3x a day (per doctor's orders), I am now on the mend. So fortunately I don't think I have FMS yet - just the CFS.