The whole, rotten religion itself is a mental illness and a disgusting aberration, so no one should be surprised that the mental health of JWs suffer so much from it.
Farkel
M.E illness amongst jehovahs witnesses?
by haujobbz 51 Replies latest jw friends
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abbagail
Well, I wondered if and when this topic would ever surface. I enjoyed everyone's stories, and BLESSINGS to Mimilly, Mulan, CC (maybe FM or not?) and all the others who are fellow-first-hand-survivors of ME/CFIDS/FM! Would you please add me to your circle! I could type pages and pages about this subject...
Whoever said there is no way to diagnose FM, that is not quite correct. FM was officially 'sanctioned" by the American Rheumatology Association in '90, and there is a specific diagnostic "test" by manual palpation on 18 specific areas of your body. If you have 11 or more "positives," then you are Dx'd with FM.
Regarding anti-depressants. These are dx'd in small doses MAINLY for the sleep disorder, which is caused by a disrupted circadian rhythm (the HPA Axis = hypothalamus, pituitary, adrenal are interrelated and damaged). Some people cannot tolerate the anti-deps., and I am one of them. Tried them all, can't stand any of them. Sleep? What's that? How about 2-3-4.5 hours at a time, for 10 years? Loads of fun, especially the drenching nightsweats. Just that alone keeps ya feeling Tony-The-Tiger Grrrrreeeeaaaatttt! Anti-deps. are deadly anyway. Bad for your heart, etc. etc. (Try SAMe instead).
I have literally TONS of info on CFIDS/ME. There is massive amounts of research on it, and any dimwit who hasn't read any of it would be wise to keep their opinions to themselves. I was active "behind the scenes" (i.e., from home) for five years in the local support group. I finally had to quit that. Just couldn't take it anymore, all the phone calls, etc. Especially because they want to know, "Who is a good doc?" Answer: NONE imho!
Viruses are not the CAUSE of CFIDS. You have a body that does not "work" like everyone else's, and are then "prone" to catch viruses. A virus can and will go into remission (if you get to rest and take care of yourself), but there are dozens of other malfunctions going on besides virus activity, such as the sleep disorders, blood pressure dysfunction, neurally mediated hypotention, endocrine dysfunction, postural orthostatic intolerance (pooling of the blood in your feet/feel like you will collapse/can't stand up in one spot for but a few seconds), hypercoagulation (thick blood - I already had one mini stroke); cognitive dysfunction (memory loss, inability to concentrate, word-finding difficulty, photophobia, sound sensitivity, etc.), vertigo, dizziness, severe weakness where your arms and legs feel like limp spaghetti, CNS dysfunction, skin and other allergies, etc. etc. It messes up your eyesight, and your GI tract. Swollen eyelids/puffy eyes. Cold hands and feet. You are more prone to osteoporosis, heart disease, stroke. And get ready for your teeth to start having hairline fractures a lot sooner than you would ever have imagined. And CC's post reminded me of the chest pain! Ugh! Yes. The list goes on and on.
Pain! Oh Momma! Pain in your calves, your thighs, your hips, the bones in your arms feel like they have been scraped with a knife, low back, shoulders, neck... geewhiz, did I leave anything out? I believe the PAIN comes from the FM rather that the CFIDS. People with FM usually do not have CFIDS. But people with CFIDS many times have FM also. I had CFIDS first, acute and chronic (the ear, throat, lymph connection, and severe crashing exhaustion for the first 10 years, from mono to full blown chronic-reactivated EBV, along with the whole range of herpes viruses from chicken pox to HSV one and two), and the next stages you are not in "acute" status, but just plain chronic and degenerating (hardly ever get the "acute" sore throat/lymph thing anymore, but all of the symptoms further above set in big time during the second 10 years).
One of the names currently being considered by the Dept. of Health and Human Services' CFS Name Change Workgroup is "Neuroendocrineimmune Disease." (I personally have voted against that name. The acronym will be worse that CFIDS). Most everybody wants the name to be put back to what it originally was, which was ME.
Stress definitely makes things worse. Stress CAN reactivate the viruses. It's a vicious cycle. The worse you feel, the less you can get accomplished. The less you can accomplish, the more things pile up. The more things pile up, the more stress you feel. It sucks big time. Unless you've got bucks and a live-in assistant, you're up the creek, and just have to mosey along as best you can, and learn not to worry about everything that needs doing (easier said than done). And hope you can get some sleep somewhere along the line. Going to sleep, STAYING asleep, and then if you're fortunate enough to actually go into a good deep sleep (6 hours is a maximum major miracle!), then waking back up from that sleep, and having to rev yourself back up just to do little chores around the apt., like laundry or vacuuming -- Vacuuming is a killer.
Things we all took for GRANTED, like jumping in a quick shower, in/out, legs shaved, hair washed, blow-dryed, makeup on, iron those clothes, etc. etc, now every act is a painstaking process, from just getting the mail to driving around the block (and your head is in such a fog, too much commotion out there on the highway. Sometimes it's just too scary, so you just don't go and you just don't do -- maybe another day I will feel good enough to handle it. That's the life... Waiting to Live -- a title, btw, of one of the first books I read about CFS).
Have I rambled on long enough? I've got lots more where that's coming from... ;)
FM and CFIDS can be genetic. My mother's mother had it, though none of us made the connections until much later, though I look just like her and act just like her (which was obvious much earlier on, of course). Why didn't we figure it out sooner? She had dark circles under her eyes from the time I was a little kid, and I used to wonder if I would have those too. (Self fulfilling prophecy maybe?) My Mom had told me I had rubella twice as an infant before reaching six months old. One doc told me after finally being diagnosed, "Your troubles began right then and there. No one should ever have the measles twice. It means your immune system is screwed up." This doc also said, "Keep fighting for the disability as they will deny and deny. But don't give up." (No one, if they have been thru it, would wish the disability process on their worst enemy. Like this same doc said, "If you're not crazy now, you WILL be before the SSD process is completed.") He also said, "If you catch it within the first two years or so, there is a good chance of recovery. But since you have had it so long already..." (he never finished his sentence). Another doc asked me, "Do you itch all over?" I said, "Yes, how did you know?" He said, "That's part of it." That same doc said, "You will have CFIDS for the rest of your life." I said, "Well, No Duh. I've ALREADY had it most of my life, so tell me something I don't know already...." :-/
I knew something was wrong when I was 27 years old, when I lived in a holistic area, and before becoming a JW. No docs for me back then, not MD's anyway. Chiropractors, food supplements and vitamins by the tons, all to no avail. When I finally became a JW, I used to tell the older sisters in the cong, "Something is not right. I do not feel well." Several of them said, "Oh, you're too YOUNG to be sick." Another said, "Eat more RED MEAT." Another said, "You don't look sick. You're fine." So I kept on denying what I already knew deep inside, that something is just not right, and kept pushing and pushing and pushing and pushing. Anyone who thinks PWCs (Persons With CFIDS) are lazy, are barking up the wrong tree. It's the exact opposite. More like the Type-A personality, over-achievers. I never missed a JW meeting or assembly in 11 years, pushing my guts out the whole time and literally freakin' dying from it... By my 8th year as a dub and trying to aux. pioneer three months in a row, I was at the complete end of my rope. I was terrified from how deathly exhausted I was, and prayed my head off every night for three months to Jehovah to please show me what to do, what is wrong? do I need a "real" doctor? if so, who/what/when/where/how? (I had been taking the supplements from a chiro for 6 years and kept getting worse and worse).
Well, stay tuned for Part II... I'm pooped. To sum up this portion: I had CFIDS before I ever was a dub, and I had it all thru being a dub (except a great 3-4 year remission near the end of my dub years, more on that later), and I've had it 11 years since leaving the dubs.
FYI: Many CFS articles are archived here: http://groups.yahoo.com/group/CFS_SALAD/
My empathies and sympathies to all who have now or ever have had CFIDS/ME/FM!!! And boo-hiss on the doubting Thomases!
Grits-Gotta-Go!
Of the "Been Sittin' Here Waaaay Too Long Class"Edited by - Grits on 2 September 2002 22:14:6
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CC Ryder
Hey Grits, I was originally diagnosed with Fibromyalgia 16 years ago when it was still not determined what it was. When I went to Baptist Hosp here in Nashville, The Rhuematologist I saw had ruled out FM. He also could not definately diagnose Rhuematoid Arthritis, but he said he felt that because I responded to Steroids that it was an indication I "probably" have a Rhuematoidal illness. So he is treating me for Rhuematoid Arthriris. I've been managing OK. Each year I notice it gets progressively worse. Hope your doing OK.
CC
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bittersweet
I read in a medical journal that a lot of people with cfs are helped by anti-depressants.I also think that in some of the cases of so-called cfs,the individual(unless she/he has been clinically diagnosed,which there actually is no conclusive medical test...although some people do have traces of the epstein-barr virus in their blood)is clinically depressed...they share many of the same syptoms..also when you are depressed your immune system has to work harder when you do get sick.Any way,I think my point is that being a witness,with all that is required of you,and always being made to feel you will never measure up to their impossible standards,can play a role in depression...and I think that in most cases of witnesses who say they have cfs are really just depressed.I know I was!!!!!!!
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bittersweet
just a little addition to my post...I believe this is a real condition,as I know a few who have it.I also know a few who say they have it,but I have my doubts...in my cong.it seemed that once the Awake had an article on it,then all the sudden new cases came up....at one time I also thought I had it...I was always tired,but yet I couldn't sleep at night,always had low grade fevers,sore throat,terrible muscle aches(my legs would ache so bad,I could barely walk),swollen glands,chest pains,etc.I also became depressed,so depressed I wanted to die.I eventually started taking anti-depressents,and after trying a few different ones,I found one that seemed to work for me.I started to feel better.Not 100% better,but a lot better.No doctor that I ever went to ever mentioned anything about cfs,but they did say I was probably depressed,so I guess in my case that was it.I also was diagnosed with hypothyroidism,which was also a reason for my being tired.I now take medicine for that and it helps.Any way,I wasn't judging anyone who really has it,I know it's a terrible condition to deal with,and dealing with peoples ignorance just adds insult to injury.I wish you all peace and happiness.
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mrs rocky2
If any of you with CF see a massage therapist or physical therapist be sure to tell them you have CF. There are specific trigger points in your nervous system. A person without CF may have pain and discomfort from stress relieved by massage these points but a person with CF will have increased pain and discomfort.
I have a lot of non-witness friends who have CF and/or ME. They have found eliminating refined sugars (and other highly refined foods) from their diet helpful, but think this may have to do with the immune system's response. I have always believed the refined foods compromise the immune system. CF and ME are immune system disorders so this makes sense to me.
It is unfortunate for those who really suffer from these very real diseases to hear of some using this diagnosis fraudulently to get out of living their life to the fullest. Most of my friends who have CF and/or ME live very full lives in spite of their pains and discomforts. And they don't wear their disorder as a badge of courage either. You might meet them and never know they had CF or ME.
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abbagail
Hi CC: Glad to hear the steroids are helping. I have to admit I don't know much about those.
You still appear to be a "spring chicken" in your pic, so I'm sorry to hear things feel worse as the years keep rolling along. I heard a TV preacher mimicking (sp?) a little old lady who complained that "LIFE IS SOOOO HARD! WHEN will it STOP being so hard???" she asked the preacher. He replied bluntly, "WHEN YOU'RE DEAD." -- Ha! :-) That cracked me up, because unfortunately, it is so true!
Thanks for the kind thoughts and right back atcha!
Grits
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Used2B1
It's been a long time for me guys, what is borg, GP's?
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AuldSoul
I had CFS (M.E.). I was diagnosed by a Doctor of Internal Medicine.
I presented with mononucleosis when I was initially tested. I took the prescribed bed rest. I went back and tested clear. I was sent back to work and within two days had mono again. This along with meeting every one of the CDC's criteria was ample proof for him to diagnose me. There were times (as a 17-year-old) that my mother had to bathe me.
However, after I DA'd myself my symptoms went away. Completely. Even at the absolute worst of my depression I did not suffer as I had before. For me it was not an excuse. It was a physical manifestation of what cult life does to a victim.
Respectfully,
AuldSoul -
truthsetsonefree
"I remember when I was in the bOrg I always felt tired and exhausted. It was caused by all of the burdensome requirements of being a JW. Studying, Meetings, Field Service (Quotas), Tending to RVs and studies making sure I kept up the image of a Fine Upstanding Brother, worrying about the "brothers" checking on me if I started to slack on anything. I didn't want to do ANY of it, so it all became an overwhelming burden to me that exhausted me."
Same here. Now that I've left I so much energy.
tsof