Myalgic Encephaloyelitis (M.E)

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Denim
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Date Joined Apr 2007
Total Posts : 428
   Posted 11/4/2010 10:18 AM (GMT -7)   
This demon of a disease has been thrown in with CFS. My husband has it and the 60 symptoms of it.
 
Anyone here have it? He is bedridden now from post exertion. It is an effort to do anything! The govt isnt doing a thing b/c not enough die from it, they commit suicide!
 
His pain killer isn't working and his pain is from head to toe. Any believers pray for us.
 
My pain is nothing compared to his, yet b/c I have to do more, after losing my last husband, it is hard and we can't get disability. Thanks for listening.
 
If anyone has it bad like him, is there any pain med or anything he could do that you know of to lessen his misery?
 
Thank you?

SiriuslySmitten
Regular Member


Date Joined Oct 2010
Total Posts : 36
   Posted 11/4/2010 7:57 PM (GMT -7)   
Well, I can only tell you my personal experience. It's my understanding that ME and CFS are more or less the same...if I'm wrong, someone correct me. My best friend Alice has it. She lives in Wales - from what she and I have experienced together, etc. - they do seem the same. I suppose there are varying degrees of it. She gets the most ill when she's emotionally upset - so an argument can send her into a tail spin. She was diagnosed at around 9 - and she will be 21 in a few days. I was surprised the first time she was visiting me (in the US) what they gave her for pain - I looked it up and it's pretty much the same as Tylenol - Tylenol doesn't begin to touch pain for me. I guess it might be a different strength or compound...
If you want to know what a man's like, take a good look at how he treats his inferiors, not his equals. ~ Sirius Black

Be yourself, don't take anyone's s**t and never let them take you alive. ~ Gerard Way, My Chemical Romance

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 11/5/2010 2:07 AM (GMT -7)   
They are not the same. They would like you to believe it so they have an excuse not to fund it. It isn't about being tired. If you look it up there are over 60 terrible symptoms. The pain daily can cause suicide, which it has. People are so unaware of this disease. Children have it and about 4 million have been diagnosed and still nothing. Tylenol? That doctor should feel the pain for 5 minutes and he would understand. Thanks for writing back. I hope your friend's case stays mild. 

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 11/6/2010 4:50 PM (GMT -7)   
I was just wondering if anyone has done the 2 day Steven's protocl testing for ME? Post exertional malaise is my continuing problem.

Here's an interesting link:

http://web.pacific.edu/x31845.xml

From the reading I've done - and my understanding may be brain fogged - in the UK and Canada PEM is considered the keystone symptom of ME rather than fatigue. I had an interesting discussion with my Dr. on ME as a question of mitochondrial funtion. Some very interesting reading if you search on those terms.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 11/8/2010 11:39 AM (GMT -7)   
Rich, my husband has the post exertion very bad and I am forgetting the name and spelling, where he can not stand for very long and must lay down. He is past the "time" for disability but in my opinion, it is absurd. He has a bad case of ME, just about every symptom and no way could he work. I can't afford a lawyer and did ask one. They need to change the laws. I have my own troubles but am in better shape then him to work. It is so unfair, we need money.
 
They need to fund for research on ME, period.
 
We are in Az., anyone know testing here?
 
Thanks Rich for sharing.

samik05
Regular Member


Date Joined Nov 2010
Total Posts : 27
   Posted 11/15/2010 9:19 AM (GMT -7)   
i'm not sure how to post a link here but i'm going to try because a couple of years ago i found an excellent website that covers everything from the differences and similiarities of CFS and ME, to a long list of resources as well as detailed information regarding the many symptoms. it's helped me a lot, especially when it comes to dealing with people who refuse to accept this disease as "real".

it's a huge site, but has a detailed table of contents which makes it easier if a person is looking for specific information. the whole thing can take a long time to read, and new info is often added, but IMO it's worth the time and effort.

i really hope this will help someone.

www.hfme.org/meoverview.htm (sorry, i posted the wrong link before; this will get you there faster)

bless

sami

smurf
If we have no peace, it is because we have forgotten that we belong to each other.
(Mother Teresa)
ME/FM/CMP, IBS, osteoarthritis, cervical spondylosis

Post Edited (samik05) : 11/15/2010 9:23:20 AM (GMT-7)


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 11/15/2010 1:24 PM (GMT -7)   
TY Sami, we know all there is to know. I thank u for sending the site. I have a very good one from Disapedia. There are over 60 symptoms to this disease and my husband has pretty much all and bad. The one person we found that can relate, went to the finest doctor, spent so much money on all types of cures and not one worked. There is no funding or awareness of ME. Calling it CFS, to a layman, sounds like the person is just tired. My husband has ibs, dialostic intolerance (can't stand for long)--he gets wiped out just cleaning his face, great pain, etc. I have chronic pain in my legs. So.....we are in dire straits and are only hope is in God, b/c even my pain, not one doctor says they can help. I thank u all for ur time.

Terrahawk
Regular Member


Date Joined Nov 2010
Total Posts : 104
   Posted 11/16/2010 8:40 AM (GMT -7)   
It is thought that CFS covers the terminology for M.E/Fibromyalgia/Post Viral Syndrome etc. These syptoms are all similar and as thoughts go are all causes of the same virus.

Try these for size:~

Dr Charles Shepherd with a CFS sufferer.

www.youtube.com/watch?v=4L7Qgdmdx9E
Also a very informative video.

www.youtube.com/watch?v=r0w9-eQ_fKQ

cool

samik05
Regular Member


Date Joined Nov 2010
Total Posts : 27
   Posted 11/17/2010 1:37 PM (GMT -7)   
Denim said...
There are over 60 symptoms to this disease and my husband has pretty much all and bad. The one person we found that can relate, went to the finest doctor, spent so much money on all types of cures and not one worked. There is no funding or awareness of ME. Calling it CFS, to a layman, sounds like the person is just tired. My husband has ibs, dialostic intolerance (can't stand for long)--he gets wiped out just cleaning his face, great pain, etc. I have chronic pain in my legs. So.....we are in dire straits and are only hope is in God, b/c even my pain, not one doctor says they can help. I thank u all for ur time.


i can empathize with both you and your husband. i'm slighly improved from where i was 30 years ago, but am still housebound and mostly bedridden, with nearly all the symptoms on the ME list. it's the royal pits, and the failure of the medical community to step up to the plate is (IMO) nothing short of criminal. there are wonderful drs and wonderful researchers "out there" working hard on our behalf, but when GPs, psychs, and government (et al) refuse to acknowledge the proof, we're no farther ahead than we were when "CFS" first started making headlines as "yuppie flu". and yes, i agree about the impression the term "CFS" gives. it's so much more than insulting; it's downright dangerous.

i'm glad you have plenty of information at hand; i must have been pretty foggy when i posted.

bless

smurf
If we have no peace, it is because we have forgotten that we belong to each other.
(Mother Teresa)
ME/FM/CMP, IBS, osteoarthritis, cervical spondylosis

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 11/28/2010 11:34 AM (GMT -7)   
Sami, so sorry, just seeing this now. It is criminal. I see my husband and KNOW, this is NOT a light matter and from writing people on facebook, I see people have them at different levels. It appears you and my husband really have it. If one can work, do activities, etc., it is not the ME, I have read of or see with my eyes, He has that (always foget the first part) sounds like diastolic intollerance--cant stand for long periods, flu systems for days, ibs, pains, it is a nightmare, and I think u understand. I have a different problem, which is of no help and we are stuck in the desert and relying on God. I pray for miracles. I thank u for writing, If u are like my husband he barely uses the computer and we cant even get disability. Sorry for venting, when u have your troubles, I wish you the best. We may have literature on it, big deal, I want them to do something. Put ads out, no one knows how bad this is. I guess no one except suicides have died from it, so we wont fund it but give it away. So wrong, so sad.
Bless you.    

samik05
Regular Member


Date Joined Nov 2010
Total Posts : 27
   Posted 12/1/2010 8:32 AM (GMT -7)   
Denim said...
Sami, so sorry, just seeing this now. It is criminal. I see my husband and KNOW, this is NOT a light matter and from writing people on facebook, I see people have them at different levels. It appears you and my husband really have it. If one can work, do activities, etc., it is not the ME, I have read of or see with my eyes, He has that (always foget the first part) sounds like diastolic intollerance--cant stand for long periods, flu systems for days, ibs, pains, it is a nightmare, and I think u understand. I have a different problem, which is of no help and we are stuck in the desert and relying on God. I pray for miracles. I thank u for writing, If u are like my husband he barely uses the computer and we cant even get disability. Sorry for venting, when u have your troubles, I wish you the best. We may have literature on it, big deal, I want them to do something. Put ads out, no one knows how bad this is. I guess no one except suicides have died from it, so we wont fund it but give it away. So wrong, so sad.
Bless you.


please don't apologize for venting. speaking for myself, i'd go nuts if i couldn't let off some steam and talk about my worries and frustration with M.E. in a safe place.

it's so hard for anyone with M.E. to get a diagnosis that most MDs will acknowledge as real. i was very fortunate to find a dr in my home province who was able to give me a diagnosis, but that was 15 years ago (after i had been sick nearly 15 years already) and in all that time i have yet to find an MD locally who will accept it as real. however, i have managed to coax/nag my present MD into treating symptoms, and i think that's what it often comes down to for us. one thing to remember is that, apart from the grace of god, there's no cure, only treatments which can make some symptoms not quite as bad.

there are varying levels of disability with M.E., and a person can go through many of those levels over time. i spent years unable to so much as raise my head from my pillow. now, many years later, i can manage the basics of self care, occasionally get on the computer, and sometimes, if i'm very careful, have someone take me to do a little bit of shopping (this always wipes me out for a couple of weeks, but it's so wonderful to get out that it's a price i'm willing to pay). i tell you this in the hope that it will encourage you and your husband. the bottom line when it comes to M.E. is that 99% of treatment is something we must do ourselves. the most important thing is to rest. cooperate with the body's demands. and if you can find a dr willing to treat even some of the symptoms, that can improve things for him somewhat.

i could share many tips, which i will gladly do if you wish. as someone whose family basically abandoned me when it was discovered i wasn't going to get well any time soon, i have had to learn many lessons the hard way and figure out how to survive on my own with this devastating illness. i very often over-extend myself, so must be very careful to use what little energy i have as wisely as possible. it's a lot like making a dollar do the work of ten dollars, which is tricky when the brainfog sets in and i can't think clearly at all, but here i am, still kicking and grumbling :-)

IMO the literature only helps us to understand what we're dealing with. i've looked at it as a tool for self-education. it also helps me spot quacks and to know better than to follow the insanely out of date suggestions of my dr. ("get more exercise and you'll be fine" ... good heavens! what century did he go to med school!?) it can also help us recognize a good or at least competent dr when we see one.

i'm guessing that you live in the southwestern US? (you mention being in the desert). i know quite a few people who live in that region, and many have found drs who will treat "CFS" in the same way M.E. should be treated. a very dear friend tells me she puts up with the CFS diagnosis because it gets her what she needs. i think one of the reasons some of the better drs know the difference between CFS and ME but call it CFS is that it's recognized more and has gained some small degree of legitimacy (very small, but every tiny step forward is a blessing!)

yes, many people do despair and take their own lives, but there are other causes, usually secondary. i have lost 5 dear friends to complications and 3 to suicide. this weighs heavily on my heart and makes me very angry. unfortunately, the medical community and the insurance people tend to use suicides as an excuse to carry on calling it a mental illness, with suicide as "proof" that it's just a "rare form of depression".

have you ever come across Co-Cure? they're an advocacy organization with a website created and maintained by people with ME and similar conditions. they can be very helpful, despite still referring to ME as "CFS/ME". as well as other useful information and a discussion board, they have what they call a "good doctor list". i found mine (the one who gave me a diagnosis) there; perhaps you can find one in your area. i don't know if you have insurance, or how much of it you have, but some of these drs are so dedicated that they're willing to waive fees or at least work out a payment plan that people can manage. i think one of the biggest tragedies with this disease is that by the time most people realize that they're in really bad shape, they've practically hit rock bottom. thankfully, there's still mercy and kindness in the world, and often we come across it when we need it most. i pray this will be the case for your husband (and, of course, for you, who must carry this heavy burden while suffering in your own right). i'm fairly well acquainted with some of the people who operate this website and know them to be good, caring people who want only to help others in the same boat.

please forgive my rambling, i'm having a really foggy day, but i didn't want to put off a reply because you've really touched my heart. i'm sure i'm not the only person praying for you. praying you're able to find a good dr who will be able to get the ball rolling not only in helping your husband at least feel a bit better, but in getting the disability pension to which he is so clearly entitled.

in case you haven't been to the co-cure site and would like to see what kind of resources and information they have there, the URL is:

prayers and best wishes

sami
smurf
Posting of links to funderraisers is not permitted......please read rule #5.   Thanks

Post Edited By Moderator (Pink Grandma) : 12/2/2010 12:47:31 PM (GMT-7)


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 12/3/2010 11:37 AM (GMT -7)   
Dearest Sami,
 
I think u r wonderful and so dear to try to help me! I can not tell u how sorry I am in the way you got treated. I am going to have to print your letter and read it better. I think I mentioned, on top of it all I have chronic leg pain that pysteriously showed up one month after moving here, I was an exercise nut for about 26 yrs, but good grief, many people have done more...bottom line the doctors are not good at diagnosing. I won't go on about me.
 
I know there is no cure and am so mad that there is no funding for ME or awareness...only depressing articles. I will try to get back to u, I am hurting, my son's friend ruined the laptop that he had given me.  It hurts sometimes to sit by the computer.
 
I would love to know what your doctor gives you for symptoms. My husband heard from a man with a case just like him. He spent thousands of dollars and used the IV for 2 yrs. Not one thing helped. I met a woman online who got great relief from the IV. Just so happens she had relatives who were in the medical field.
 
Sami, if u don't mind, I would like to pray for you. I do belive in miracles. I thank u for taking the time to write all that u did. I know it isnt easy for you. I would love to hear of any tips and what the doctor gives you for your symptoms. It seems like my husband has it bad. His dad had MS--could be a link? A most depressing article was in Hummingbird. I want to know who writes these articles if they aren't doctors, no initials after their name, how do we know how true they are? I have gotten sceptical of much of what is written for various things. There can always be a slant or opinion or lie depending on the source and too many will pass it on as the truth.
 
Bless u Sami and thank u again. 

MoogMan
New Member


Date Joined Nov 2010
Total Posts : 3
   Posted 12/3/2010 11:56 AM (GMT -7)   
I have no idea what either of you are experiencing (though I suffer with Adrenal Fatigue). I have just prayed for you both. My heart breaks for you and my hope is that healing will come your way.

samik05
Regular Member


Date Joined Nov 2010
Total Posts : 27
   Posted 12/3/2010 8:14 PM (GMT -7)   
Denim said...
Dearest Sami,
I think u r wonderful and so dear to try to help me! I can not tell u how sorry I am in the way you got treated. I am going to have to print your letter and read it better. I think I mentioned, on top of it all I have chronic leg pain that pysteriously showed up one month after moving here, I was an exercise nut for about 26 yrs, but good grief, many people have done more...bottom line the doctors are not good at diagnosing. I won't go on about me.

I know there is no cure and am so mad that there is no funding for ME or awareness...only depressing articles. I will try to get back to u, I am hurting, my son's friend ruined the laptop that he had given me. It hurts sometimes to sit by the computer.

I would love to know what your doctor gives you for symptoms. My husband heard from a man with a case just like him. He spent thousands of dollars and used the IV for 2 yrs. Not one thing helped. I met a woman online who got great relief from the IV. Just so happens she had relatives who were in the medical field.

Sami, if u don't mind, I would like to pray for you. I do belive in miracles. I thank u for taking the time to write all that u did. I know it isnt easy for you. I would love to hear of any tips and what the doctor gives you for your symptoms. It seems like my husband has it bad. His dad had MS--could be a link? A most depressing article was in Hummingbird. I want to know who writes these articles if they aren't doctors, no initials after their name, how do we know how true they are? I have gotten sceptical of much of what is written for various things. There can always be a slant or opinion or lie depending on the source and too many will pass it on as the truth.

Bless u Sami and thank u again.


bless your heart, prayers are always welcome. in the past 25 years i have prayed often and been prayed for often, and have seen a lot of things drs don't believe can happen.

a lot of the people who write the articles are either speaking from personal experience, talking about what they have learned, or are quoting experts. on Hummingbird, many of the papers are written by the owner of the website, but she refers to many experts before putting anything in print. she is a good, honest, and very caring person. we have talked about many of the things you have said, for example trying to "get the word out" about M.E.

there was some good news from Co-Cure a couple of days ago. well, it was sad news in some ways, but when the BBC runs a major piece about a woman suffering from M.E. we know there are people paying attention. it's a start, though i honestly don't expect to see much in what's left of my lifetime. i'm almost 60, and my various health conditions don't make me a prime candidate for reaching old age. not that i mind, it's not in my hands except to take the best care of myself that i can.

i don't receive much in the way of treatment. a friend in Arizona benefits from saline IVs and magnesium IVs, but i don't find them helpful, probably because my veins won't hold an IV. i take a muscle relaxant on an as-needed basis, as well as something for nausea and sleeping tablets. i also take a lot of Ibuprophen (mostly for inflammation). i'm blessed to have high pain tolerance, but i have yet to learn how to manage the total exhaustion, dizziness, and weakness without help from medications.

the trouble is, from all i've heard, that no two people respond equally to the same types of treatment. usually it turns out to be the least complicated and less expensive treatments. the way i see it, if someone's advertizing a treatment, it's probably not worth my time or money, but then i'm awfully skeptical due to so many years of people posting or advertizing a "magic bullet". nutrition is important, and by that i mean nutritious foods. I know a few people do benefit from them, and i think they're worth a try, but usually a simple multivitamin is useful. for me, vitamin E, in low doses, is a blessing as it relieves many of my muscle cramps, and a friend takes an adrenal supplement ... i forget the name, something like Insocort? ... that she says has made a huge difference.

i should add that my dr doesn't "believe in" M.E. but because of my other conditions, he's often willing to treat some of the symptoms. sometimes i have a bad reaction to the medication, other times it helps a lot. i'm trying right now to convince him to rx oxygen for me. during a recent visit to emergency they gave me oxygen and i couldn't believe how much better i felt for the next few hours.

i also find any bit of massage, especially on my shoulders, really helpful. it helps with the pain and also allows more blood to get to my brain, which i reckon is a good thing.

i'm just taking a shot in the dark, but it almost sounds to me as if you may have fibromyalgia and/or myofascial pain syndrome. there's a lot of information about both, so if your dr is being a dunce, maybe you could at least get an idea if that's the problem online.

well, i won't chatter on. i'm so sorry to hear about your laptop, and i know how hard it can be to sit at a computer for long. it doesn't take long before the pain and balance problems make it hard to concentrate on what i'm trying to say.

take care

smurf
If we have no peace, it is because we have forgotten that we belong to each other.
(Mother Teresa)
ME/FM/CMP, IBS, osteoarthritis, cervical spondylosis

samik05
Regular Member


Date Joined Nov 2010
Total Posts : 27
   Posted 12/3/2010 8:15 PM (GMT -7)   
MoogMan said...
I have no idea what either of you are experiencing (though I suffer with Adrenal Fatigue). I have just prayed for you both. My heart breaks for you and my hope is that healing will come your way.


thank you MoogMan. i will add you to my prayers as well.

smurf
If we have no peace, it is because we have forgotten that we belong to each other.
(Mother Teresa)
ME/FM/CMP, IBS, osteoarthritis, cervical spondylosis

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 12/4/2010 12:56 AM (GMT -7)   
Thank u MoogMan, for ur kindness, I offer my prayers to u and appreciate your concern and Sami's.
 
Sami, my pain is only in my legs and between working out for years and spinal stenosis, I dont think fibro has every been on half of a body. It is from my loer spine and goes thru both legs and is sporadic.
 
What I read was undocumented on Hummingbird, no doctors mentioned. How she arrived at such conclusive statements I found hard to believe certain things, especially having first hand info on MS. I can't say more than that. It is hard to feel certain on many matters in life.
 
Thanks so much for the info and time. I cling to God and pray for you.
 
Bless u, Sami. 

samik05
Regular Member


Date Joined Nov 2010
Total Posts : 27
   Posted 12/4/2010 3:41 PM (GMT -7)   
Denim said...

Sami, my pain is only in my legs and between working out for years and spinal stenosis, I dont think fibro has every been on half of a body. It is from my loer spine and goes thru both legs and is sporadic.

What I read was undocumented on Hummingbird, no doctors mentioned. How she arrived at such conclusive statements I found hard to believe certain things, especially having first hand info on MS. I can't say more than that. It is hard to feel certain on many matters in life.

Thanks so much for the info and time. I cling to God and pray for you.

Bless u, Sami.


oh, i see i missed that part about it being only in your legs and that you have spine troubles. it sounds as if it must be terribly painful. i hope you are able to find some kind of relief soon! it must be so very hard to take care of your husband when you yourself are suffering so much.

about Hummingbird, i would vouch for Jodi any day. she's very ill with ME but she gives every scrap of her energy to helping others. she wouldn't invent anything or post medical information without checking the source, but she does write papers about what others with M.E. have experienced. medical information is important, but the daily experience of living with M.E. can't really be told by anyone who doesn't actually has this disease. in other parts of the site, she has provided a lot of valuable information from drs who have devoted their careers to treating people with M.E.

thank you for your prayers, and please know i pray for you and your husband every day.

smurf
If we have no peace, it is because we have forgotten that we belong to each other.
(Mother Teresa)
ME/FM/CMP, IBS, osteoarthritis, cervical spondylosis

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 12/4/2010 11:21 PM (GMT -7)   
Dear Sami, Thank you. I manage. I go up and down and have faith in God. Thank you for your prayers and I will pray for you right now. Bless you and thank you for your concern and kindness. Trust me I welcome it and dont take it for granted. I have seen so much what appears as coldness to my situation. I only ask for a little support and yet will get ignored by online people that I should not take so serious.
I know I may be naive, but I know I do care about others and am still amazed when I feel ignored. So....I thank you and pray that our God comfort you, give you peace and healing. Bless u.
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