Discussion in 'Fibromyalgia Main Forum' started by fungirl2100, Feb 2, 2007.

  1. fungirl2100

    fungirl2100 New Member

    Friends of both CFS & FMS,

    I noticed when I came to this board that they classified us together. What I can't figure out is why everything is so one sided. For instance only FMS People where do you live? or only CFS Sufferers have you made a full recovery? and it's vice versa. Why can't we unite to a degree?

    We are all suffering are we not? Couldn't we pool all our knowledge together & help people who suffer from one or both. I have a feeling I am in both categories as does my doctor.

    It wouldn't be so one sided. We should be one big family.

    Just a thought as a newbie. I haven't been here long, but I think unity is the solution, not the problem.

    thanks for hearing me out. I don't think I am alone in this either at least I hope I'm not. I am just making a gentle suggestion.

    your friend,
    Fungirl :)
  2. vickiw

    vickiw Member

    I've been on this board for a while and this comes up every now and then. In fact, for a while ProHealth was going to have 2 separate boards but I guess that was dropped.

    Personally, I prefer most posts to be clear about what which disorder is being addressed because I have only CFS. I just don't have the energy to go through all the posts and generally, I can't relate to the ones that are about FM. Not that I want to be unfriendly, but my energy is so incredibly limited.
  3. fungirl2100

    fungirl2100 New Member

    I understand your point, but it seems some CFS people have some energy because I see some that post quite often I see your point though. I guess with that being said for you that would be why you could not, but what about the others that do have the energy?

    I am not trying to be unfriendly either, but in some ways I know we relate. I read the boards for both & I fit in both.

  4. shar6710

    shar6710 New Member

    I have to agree with VickiW many of the FMS posts simply do not apply to me. Much of the advice offered to and by FMSers is simply impossible for me or would make me feel even worse.

    I also don't have the energy sometimes to read and respond to FMS posts although on a really good day I might. I think we do a good job of pooling our info and helping one another but not everynone had both syndromes and sometimes we want to find what others with our particular syndrome suggest or experience simply because it saves time.

    There is much debate on how much the two disorders have in common and whether they are indeed related. If you listen the NPR radio program posted by Phoenixrising2 you'll hear Dr Lapp say that current research indicates that they are not.

    Just because one post is for FMS or CFS doesn't mean we're not united, but we need to recognize our differences sometimes too.


  5. fungirl2100

    fungirl2100 New Member

    I understand. I know everyone's capabilities will vary.

    I understand & will not make an issue of this.

    I just thought it would be nice if the worlds could collide at times. that's all.

    your friend.
  6. Slayadragon

    Slayadragon New Member

    I personally post very often because (at the moment) I have no energy whatsoever.

    I have not left the house in a couple of weeks, and cannot bear even to have a telephone conversation.

    Actually, having a conversation with my husband is very stressful as well, and we exchange only a few words per day.

    My husband has been bringing me food (fairly nutritious food), for which I am grateful. Cooking is beyond my capabilities too.

    I have been (barely) managing to take a shower every day before climbing back into my pajamas.

    The only things I have been doing for weeks are sleeping, watching movies with the sound turned way down, and posting on this board.

    Sometimes appearances can be deceiving.

    Best regards,


    P.S. If you look at the responses to the "Where did you grow up" posts, you may see a bit of a pattern (as I did) that the amount of toxic exposure seemed to be greater amongst those individuals with fibro (whether or not they also had cfs).

    This is a convenience sample and provides no real evidence that toxins are related to fibro, but I nonetheless found people's comments interesting to ponder.

  7. TinaJones

    TinaJones New Member

    I read your posts often...think you are very, very bright. You remind me of a good friend I have here in CO.

    Re: your post - wow, sometimes I read something and I'm like "wow, I really could've written that word for word." I'm sorry you are going through a low-point right now.

    You are right...I'm actually on here more when I feel worse. I'm completely homebound right now, too. But my posting, unfortunately, doesn't equal energy.

    YES, it's a "good" moment when I can get a bath or shower, to only put my PJ's on. I get dressed these days only when I have to go to the doctor...and, even then, we are talking just very basics sweats/t-shirts.

    Thanks for taking the time to share all your insights. I really pray that you feel better soon. Take care...Tina

    BILLCAMO New Member

    Since I have both CFS/CFIDS and Fibro , I find it easy to collide & unite. lol . The symptoms and effects of both are often interchangeable. IMHO , these DD's are each different , but closely related to each other. And other DD's also appear to be closely related.

    I'm very fortunate in the respect that I don't have all of possible symptoms and effects of both DD's to the fullest extent possible. Brain fog is one of the most commonly shared challenges that I have to fight. And yet , for PWF's , it's often called "Fibrofog". PWC's often just call it "Brain Fog". Same problems , just different names.
    I do realize that even the closest knit family tends to have disagreements and squabbles from time to time. And this family is no different in that respect. We all just have to work harder at working them out.

    One of the biggest discussions I've seen anywhere is the one about what to call CFS. CFS , CFIDS , CFS/CFIDS , ME , and a host of other ideas have been presented. If we would just pick and stick with just one name , our energies and efforts could be directed to more important areas. But , that hasn't happened....YET.

    IMHO , we are ALL very special people !

    Blessings ,

    [This Message was Edited on 02/02/2007]
  9. Slayadragon

    Slayadragon New Member

    Thanks very much for your kind comments.

    Best, Lisa


    BILLCAMO New Member

    That the world , and more Drs. , are acknowledging that our DD's are real ! That is an important step !

    More research needs to be done on the "cause & effect" aspect. Although each of us is aware of the effect on ourselves , the cause still has many "possibilities"...

    Treatment is difficult , at best , without knowing the cause(s)...... Treatments will become more effective once the cause(s) are found !

    Here's to more aggressive and effective research !!!!!

    Blessings ,

  11. jaltair

    jaltair New Member

    Since I have FMS and CFS, I look at posts with titles that interest me and not just at the "FMS" or "CFS" side. I have lupus as well and many of the things that people find that help them with the FMS and CFS seem to help me.

    I thought it was interesting to see where people come from and relationship to the environment with disease. My sister and I both have immune disorders. We were raised in Central CA, south of LA, in the San Joaquin Valley as county "bumpkins." We were exposed to a myriad of chemicals, lived on a chicken ranch and played in the grain as well as on hills of manure, mosquito spraying wasn't uncommon, and neither were airplane spraying for fields, which frequently hit our home area. So .... we were assaulted by chemical forces during our very young, formative years. I'm sure this had an effect on our immune systems.

    Now, how does FMS or CFS play into this all for me? Anyone's guess is as good as another's. Maybe increased attention to these diseases in total will help everyone's understanding.
  12. springrose22

    springrose22 New Member

    Fungirl - interesting thread. Lisa, had no idea you were so sick, I've seen you posting everywhere lately and find all of your posts very informative. I'm a big mess right now with CFS. Take care of yourselves all. Marie
  13. Slayadragon

    Slayadragon New Member

    Thanks for your note. Take care of yourself too, please.

    Best, Lisa

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