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Fibromyalgia Community
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Avatar universal

Disappointed in site no cfs only fm

Has anyone noticed (if there are any members left with ME/cfs,) that this site has changed over the last year? I feel so sorry for all the people with fibro but what about us? I used to look forward to thinking "oh, I'm not the only one", Now it's "OMG, I'm the only one on the site!", Very disappointing. I would just like to know where all the others have gone so that I can go there too. Anyone know ?
11 Responses
Avatar universal
You may want to consider notifying MedHelp. I somewhat agree and think that if they had two separate forums (one for fibro and one for CFS), then they would probably get more people who have a CFS diagnosis.
975514 tn?1324997938
I think that many doctors feel that FMS and CFS/ME are very closely related if not variations of the same disorder and that is why you see only one forum here for your condition. There still are many here who I talk to who suffer from primarily CFS/ME and not Fibro. I have more Fibro and my sister has CFS to give you an example. I hope this helps a bit.
-Dusty
Avatar universal
There are so many similarities between these "syndromes" and "autoimmune" diseases. And we shouldn't forget how fibromyalgia and CFS symptoms could easily fall into the lyme disease category or even Gulf War Syndrome. I think this is why everyone with these conditions need to speak out as a whole. Autoimmune diseases, in my opinion, have been ignored by the medical professionals for many years. There needs to be more research and education involving all of these diseases.
773755 tn?1328119777
as dustybrown and alwayshealing say.
plus - i'm as with you - cfs - at first a bit disappointed with lesser cfs content here. as i understand it, the absence of cfs people from the forum is simply cause we're just too damn crook to sit up and turn the computer on.
i won't speak for other autoimmune folk - cause i can't. when i first got cfs i wanted to look online for help and stuff - and simply physically could not!
sort of like having a website for lo-tech people (no-one would show up); er, but i digress. sorry that probably doesn't help. when you have cfs, nothing seems to help! so, as to where we've gone, folk with cfs can't get to the computer cause we're clagged out on the floor or couch...

i notice the issues faced by all cfs/ me/ fibro are very similar, and i get a lot of support from that, have been unburdened plenty by the help from others here...

this very thread illustrates the part of collateral damage of cfs that is isolation.
Avatar universal
A CFS User Group could be another option. If you click on See All Groups in the bottom right panel, there's a spot there to start your own group. Then you could monitor and help out in this forum as needed while getting closer to each other in the group.
Avatar universal
Choronic fatigue syndrome and fm go hand in hand. Very related so there should be sum info sumwhere here to help with cfs. Greatest blessings to u
Avatar universal
I think my main problem is with having CFS... is that some of my physicians think my muscle aches and sometimes pain are fibromyalgia symptoms. However, I had the tender point testing done and I do not have fibromyalgia. These conditions are so similiar and I believe should fit into the autoimmune category.
620923 tn?1452915648
U may be on to something as I was misdx with fibro yrs ago and in the last yr found I have Ehlers-Danlos Syndrome.......U may want to look into other autoimmune disorders...even Hashimoto's thyroiditis .....many who were on may have been dx'd with one of these other issues and moved on to those sites....but CFS goes hand in  hand with many conditions not just fibro....

Best of luck in locating ur root cause of CFS
"selma"
Avatar universal
Would have to say from my expierience chronic fatigue/fibromyalgia are the symptomatic part of a much bigger picture that doctors cant/ couldnt be bothered figuring out. Not everyone has positive tests for things like arthritis and I am living proof of that. Some docs particularly the young emergency room staff seem to rely on the computer printouts and x ray machine to make their diagnosis for them and if it dont show up there your going home no better than you came in.
Avatar universal
*raises hand*

I have ME too.  You're not alone.  But yes, I feel that ME/FM tends to be lumped together.  

I was diagnosed with ME first and then a year later, FM.  
329994 tn?1301663248
I have had somewhat of a hard time finding others with CFS that don't have fibro but I have learned alot on here from those that do have fibro. There are alot of similarities between the two. I think, from the basic research that I have done, there isn't a lot of information on CFS, nor is there any info on how to treat it!!!  I wish there was....
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