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Other Anyone here have cfs/me, fibro or other chronic illness?

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Lionheart

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I have both CFS and Fibro and I am having a bad day. It would be nice to talk to others who suffer with these problems and learn what works for them to help with the pain and exhaustion. I am a Complex-PTSD sufferer and the anxiety, physical exhaustion, and pain all seem to be connected. I would not wish these disorders on anyone, but I do hope there are others here for me to talk with.
 
I'm right there with you LionHeart. Going on 20 years since I got sick.

Denial of my limitations plays a huge role in me. Not willing to accept the illnesses.

Today, I making mandatory 30 minute rest periods after 20 minutes of activity. At this point in my life, I'd give my left nut if I had one to get better.

Living in constant fatigue and exhaustion is no way to live.

Here's to mandatory light duty. I hope you follow my lead.
 
Hi Tlight
I have had Fibro for ages and then since January have had no symptoms. Funny, the pain has come back in the last week since I started reading this forum and studying PTSD. I am going to put my mouse in my husbands car for a few days so I stay away from the computer and settle back down again. I was not sure if the fibro pain was directly related to upset, but this has proved it for me. I get pain mainly in my wrists now, but it was so bad three years ago I had to crawl up the stairs. It felt like there were shards of glass in my leg muscles.

I never took meds for it. Though I did try one of the old style antidepressants. I am now on Pristiq and Edronax and have been very well on these.
I hope you are feeling better today.
 
Hallo,

I have been diagnosed of M.E. this year (but I suffer it since 5 years) and I suffer CPTSD since 15 years.

The therapist I had was carrying on a study in which they hipotized that PTSD and M.E. or F.M. go togheter because they have a common cause, that is a modification of brain.

She told me I was affected by M.E. before I was diagnosed by an endocrinologist.

Bye.
 
I also suffer from fibro, along with gout, severe arthritis and migraines. I have had the migraines since I was a child and a host of other physical problems. Some days I feel like it really is not worth going on. I have all the pain and also severe back and neck problems. I hurt all the time. Then you add the PTSD along with depression and anxiety.......What the heck am I here for?
I guess there is a reason but right now I can not figure out what it would be....
 
Will post more later, but suffice to say, yes. C-PTSD, Fibro, CFS, Migraines, Bunch of stomach disorders - woo. But I agree, between the managing of chronic pain, attempting to use what little energy one has smartly (I don't do this far too often), and the plethora of symptoms related to PTSD, it's tough. *sigh*
 
I have other chronic illnesses. Quite a bunch of them. Don't really want to write them down here because everytime someone reads or hears all of them they think I must be half- dead or something. I'm not. It's just the way it is and I can't do anything about it, just make the best of what my body has to offer to me.

I know how exhausting it can be to have the (c)PTSD- related psychic problems AND a partly out-of-order-body. In my darkest days I sometimes think it's just unfair to have all of it in one person. But well, nature's seldom fair.
The good thing is that I can say to be VERY rare because it's really very unlikely to have only two or three of them at one time. And I have more ^^ :P. I think I'm just a failed genetical experiment ;).

So, my best wishes to all of you, may it get better... All of it.
 
Anxiety, Fibromyalgia, Asthma, Diabetes, High Blood Pressure, Rheumatoid Arthritis, Hypothyroidism diagnosed with all after a car accident in 1985. I had an emotional weekend and I hurt like hell.
I agree with TLight, manditory light duty! (However you should know better re the left nut comment. Don't piss the PTSD Gods off, you might just grow one!!!!!)
 
Hi Lionheart,

I am sorry you're having a crappy day. My doctor thought I might have fibro, I had this incredible weakness/fatigue and all over pain and aches on and off for the past 3 years. I thought maybe there is something to the diagnosis, but it turns out I was having a flashback to a time of starvation, over and over again. It took me that long to actually link the feelings to the memories. I remembered that it happened, but it didn't have any feelings associated with it. And then I had all these feelings that were not linked to anything else.

Somehow in the last flashback I found this forum and as I started writting posts it just poured out. I am still feeling a bit shaky saying this and knocking on wood, but since I've done this excavation and applied some of the healing strategies I learned in therapy before, I've been feeling normal again. Like I have energy and apetite and my body feels good, no pain. I figured I'd share this experience, since I have cPTSD too and fibro symptoms are so similar to the helplesness cPTSD suferrers know so well.

Hope you feel better soon, caring thoughts and hugs going your way!
Bluecat
 
Well, I finally received an honest answer about treating CFS/ME. The following is a post from a long-time CFS sufferer and member of the CFS forums (where I receive information and support for cfs/fibro) in response to a post I made concerning my frustration over not receiving any medical treatments for this disorder;

"Dr. Jamie Deckoff-Jones has said that the cfs patients who do the best (or the least poorly) are the ones who do not pursue aggressive medical treatment, because docs really don't know what to treat or how to treat it with us, and a lot of docs push the wrong things on the patient and it makes us worse in the long run. Benign neglect sort of puts the patient in the position of self-regulating their activity out of necessity, which is important to prevent things from going downhill any faster than they would otherwise."

I am very dissapointed with this news! I have received many more messages just like it. I am being told that energy conservation is the biggest thing I can do to help myself and I am not one to settle for these imposed restrictions...there must be something more I can do to recover from this illness.

I don't respond well to people not being honest and direct with me, especially a physician. I wish someone had told me this from the start. I feel so frustrated.

Did ya know that most people who die from CFS do so because they pushed themselves too hard? I mean c'mon, how sad is that?

I think the medical world, and certainly our government agencies, need to be honest and forthright about the nature and treatment of this illness.

Does anyone else find physicians using "benign neglect", (omg, I hate that phrase), to be highly suspiscious. I wonder if there is something the government knows about this disorder that they are not telling us. Perhaps, I am being paranoid, but it is important to me that I get this disorder under control because CFS flare-ups tend to trigger PTSD flare-ups in me.

The more I think about it the more I am sure that I can't accept this as an answer.
 
Somehow in the last flashback I found this forum and as I started writting posts it just poured out. I am still feeling a bit shaky saying this and knocking on wood, but since I've done this excavation and applied some of the healing strategies I learned in therapy before, I've been feeling normal again. Like I have energy and apetite and my body feels good, no pain. I figured I'd share this experience, since I have cPTSD too and fibro symptoms are so similar to the helplesness cPTSD suferrers know so well.

Over the years there have been so many times I have been in severe pain and been sure I would never walk again or something similar or had some crippling, chronic disease only to discover a few days/weeks later everything worked just fine I have come to understand that kind of stuff as internal manisfestations of intrusive thoughts and feelings and passing moods. Little stuff (muscle tension, small muscle spasms tugging on nerves and stuff) comes and goes all the time. Major stuff (muscle tension severe enough to leave tears and bruises, spasms severe enough to cause joints to cease to funtion, or my back to spasm out) usually involves both a ptsd anniversary (very high internal stress from old stuff) plus a significant level of stress in my current situation plus a specific trigger in my current situation.

For example, Christmas is a significant anniversary for me due to Vietnam stuff that happened Christmas 1967. This Christmas involved a high level of stress in my current situation due to my wife's alztimer's and the thought this may be the last Christmas she would actually be able to enjoy in a more or less normal way. Then, the week before Christmas suddenly a bunch of strange charges started popping up on my credit card. Old stuff + current stuff + trigger = severe muscle tension and pain. My back wasn't working. Crawling, twisting sensations, steady pain of tears and bruises and pinched nerves.

It's not really any different than a passing mood. I have learned to not challenge the passing stuff while it is raging, to just keep myself as safe and comfortable as possible and remind myself this will all pass and I will be fine. This particular episode started winding down after about 2 weeks and by 4 weeks I was back to normal. I called the credit card company and took care of the strange charges. I did the behaviors I would have normally done during the social parts of the holiday season even though the physical pain was there, just as I did the behaviors I would have normally done even though some of the old thoughts and feelings wanted me to isolate or tell people off.

So the old anniversary is past for this year. My wife appeared to have a good holiday, which was important to me. And the credit card thing is history. And I feel good about my ability to not let the ptsd stuff (psychological or physical) result in behavior that disrupted my current situation. All current activities and relationships went well.

It is my opinion that doctors and therapists tend to downplay the physical side of the what is considered a psychological disorder, generally wanting to treat the physical symptoms as seperate and unrelated. If we don't learn the specifics of the physical side of our ptsd experience and learn to process it much as we learn to process our passing moods, we will end up with a lot of unnecessary medication and/or medical procedures and the side effects and residual effects of those compounding our challenge of learning to live with ptsd.

Ted
 
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