Chronic Fatigue/Fibromyalgia

[River Wood]

An old highschool friend of mine has been not feeling well for years...and of course I feel pretty bad for her...doctors never really tell her much so I started investigating on my own on the internet. Seems like her symptoms fall in the catagory of CFS and/or Fibromyalgia...I haven't mentioned it to her yet, my findings.

Anyone know much about it or have it or if you do are you willing to share what you do about it or what helps you?

 

[MInx]

I have both, diagnosed by doctor. Nothing seems to eliminate it but some stuff helps. Plenty of rest and keep moving when you can. I am getting water therapy in a warm pool, heaven! Lycria is prescribed often to help but I ended up allergic so had to quit taking it. Take Zonogran now.

Sometimes I have to just give up and lay down, other days are great, never know and pain is all comsuming. I wish your friend all the luck in the workd and hope she/he gets well deserved help. There is the Fibro association online just search and it will come up, also a forum..helps to talk to other people with it. It is very real and very tiring and painful.

Maxine

 

[Buckskin gal]

I too have been diagnosed with Fibromyalgia. It is so very true that it just wipes a person out and can hurt so badly. There are certain places on the body when touched that are extra sensitive to pressure and can be very painful when touched. Sometimes just having my hubby touch my shoulders or arms make me jump. Rest is the only thing that helps but it is very frustrating because we want to get up and go but can't. When I do have a good day I tend to over do it and then I am zapped again for several days. Doctors say it is very important t get a good nights sleep...there is no cure, just management. I would highly advise anyone that is having a lot of body pain to be tested for vitaminD level. Mine was very low and went on huge doses of Vit D....took some time but i think it has helped a little...Vit D defeciency can cause ones bones to hurt. Doctor has given me pain pills and says to use them regularly but I am afraid of getting addicted to pain killers. Warm relaxing baths and sitting in the Jucuzzi helps ease the pain. It really becomes a way of life to live with it the best we can. Mary

 

[Wee Mite Miniatures]

My daughter in law has Fibromyalgia. She has a really rough time with it. For a while she was doing really good sticking to a low carb diet. During that time she felt so much better, she was a totally different person. Diets can be very hard to stick to and she is no longer eating low carb, she is once again having a very hard time.

I know several other people with Fibromyalgia that eat low card and they all say it makes a world of different.

 

[Boinky]

has she been tested for Lyme disease? those both go hand in hand with lyme as well.

 

[Pepipony]

I have both, however they are because of my Lyme disease. I beleive that while there is FMS/CFS out there, much is caused by something else and Drs either cant or wont figure the root cause. It is hard for Drs too look at a herd of horses ( your symptoms) and see that one lone zebra ( that one non-CFS/FMS) symptom. Quite often its just ruling things out, either by testing or by clinical dx.

CFS gives us a wall. We can work up to that wall and if we go over, the next few days are rough to say the least. Usually we cant see where that wall is, so we overdo it then we pay.

Here is a wonderfull way to sum it all up. Butyoudontlooksick

It is very hard to have an invisible dissability. People dont know just how hard, unless they themselves have one. Not even SOs/family can truly get it.

 

[Boinky]

i agree pepi! definatly not fun struggling with these sort of things. Even harder to find someone (doctors) that are willing to learn or know what is happening and to listen.

 

[Buckskin gal]

Right with you gal! I too believe that fibro comes about from something else. there are studies and research going on that indicate that the nervous system gets messed up and then fibro sets in. I thinki this is a link for some because I can say that I believe my fibro came about from many years of pain from other things and also a whole lot of stres that I didn't know how to cope with. I find that my body reacts to stress with more pain. I think we all need to go to some tropical island and vegitate!

Mary

P.S. Must ADD, OUR MINIS MUST COME WITH US BECAUSE THEY ARE GREAT STRESS BUSTERS!

I have both, however they are because of my Lyme disease. I beleive that while there is FMS/CFS out there, much is caused by something else and Drs either cant or wont figure the root cause. It is hard for Drs too look at a herd of horses ( your symptoms) and see that one lone zebra ( that one non-CFS/FMS) symptom. Quite often its just ruling things out, either by testing or by clinical dx.

CFS gives us a wall. We can work up to that wall and if we go over, the next few days are rough to say the least. Usually we cant see where that wall is, so we overdo it then we pay.

Here is a wonderfull way to sum it all up. Butyoudontlooksick

It is very hard to have an invisible dissability. People dont know just how hard, unless they themselves have one. Not even SOs/family can truly get it.

 

[River Wood]

has she been tested for Lyme disease? those both go hand in hand with lyme as well.

I don't "think" so but I'll have to ask her...

 

[Pepipony]

A note about Lyme testing. Tests stink, to say the least. The Lyme bacterium isnt present in the blood at all times, nor are antibodies. This spirochete is 'smart' , it can change form and hide untill the host is more vulnerable to infection. Even with a positive test, I have heard and seen, firsthand, that Drs will discount the test as being false positive. Though a false negative never crossed their minds

The CDC states that Lyme is a clinical diagnosis and that testing isnt foolproof.

 

[Boinky]

I agree. You should have a Western Blot, Elisa..and there was one other one that i can' tthink of and you really should have all of them done. they also should check for arlechia, Babesa and other co-host bactria's. My tests never actually came back possitive, however the tests check for certain "bands" of immunity. Mine had some bands which the testing place wrote off as "being vaccinated" and came back as "negative" because of it officially. I NEVER was..therefore I shouldn't have had any sort of bands. that was a red flag. i had the other tests done which came back negative except for one of the co-host bacterias. to have this bacteria you HAD to have lyme...so that was my possitive right there...but a very round about route to get it! I was fortunate that I had a doctor who has lymes herself and was treating a few patients and knew what to look for and how to look for it ect. not everyone is quite as fortunate!

I was just in the ER last week because i was having an allergic reaction to a shot.... the doctor was a real butt! when i said i was being treated for lyme he asked how long and isaid "8 or 9 years" he was like "well i've never heard of anyone being treated for that long!" he kept going on and on about it and i was like "i'm not the only one... " i just wanted to be a jerk back and be like 'you need to stop being a butt and do some homework because apparently you don't know everything you think you do!"

anyhow i wouldn't rule out lyme unless i had all those tests done.

 

[RainSong]

P.S. Must ADD, OUR MINIS MUST COME WITH US BECAUSE THEY ARE GREAT STRESS BUSTERS!

And people wonder why I want a m ini so bad

I have "something". Fibro, Chronic pain, Lyme, RA, we don't know yet. All i know is I am so tired of being tired and I've gotten to realize I'm in pain all the time- It took vicoden to show me that. I don't take much in pain meds, maybe 2 ibuprofen a night, and have always been very sensitive to them. The vociden made me feel great- pain free for once! And then I over did it and crashed the next day.

 

[Boinky]

It's aweful isn't it! i hate being tired all the time and i'm SICK OF BEING SICK. if it's not one thing it's another. it really seems ot have attacked my immune system and i get flair ups of shingles, ulcers on the cornea of my eye... and about anything going. really stinks! as if it's not bad enough with all the other stuff ontop! I really wish there was more focus on research and funds going towards it!

P.S. Must ADD, OUR MINIS MUST COME WITH US BECAUSE THEY ARE GREAT STRESS BUSTERS!

And people wonder why I want a m ini so bad

I have "something". Fibro, Chronic pain, Lyme, RA, we don't know yet. All i know is I am so tired of being tired and I've gotten to realize I'm in pain all the time- It took vicoden to show me that. I don't take much in pain meds, maybe 2 ibuprofen a night, and have always been very sensitive to them. The vociden made me feel great- pain free for once! And then I over did it and crashed the next day.

 

[Pepipony]

I felt So good the other day, woke up with NO headache, which is rare. So I did stuff. Mowed, weeded, went petrified wood hunting. Stopped when I felt I was overdoing it. I have crashed and its been rough the last couple days.

When I do things, I think about the shortest or easiest way. Like unloading the dishwasher, its easier to unload into one stack, then walk over a few pieces. Even deciding if I can walk to hubbys shop, maybe 300'. There are some times that I just wont go, its too far. Going grocery shopping can be a pain, if i forget something on the other side of the store, probably wont go back. I have been so worn out just doing that, that when I get home I'll unload cold stuff and go crash.

We also have crash times, when our bodys dont just say its time for a nap, when you can. It says you will go to sleep NOW. My last few years working, if I sat, I would sleep, period. Have even pulled off the road, on my 'long' 1/2 hr drive home, to nap. But since I look good, people assume that I am.

Boinky, I like the WB tests. Since it shows definitive dna bands, you can argue with a Dr. 'If' you say I dont have Lyme, than how did band 23 get there? Etc. I have too dealt with idiot Drs, and ERs. Too the point that if I need an ER again, I will go see my Vet

I had a very bad reaction to a med one time. I stupidly was honest and told the ER Dr that I was coming off oxycontin. Course since people cant possibly have Lyme for a decade, I was lying, and was a druggie. I hadnt eatten in a week, couldnt hold down even water and of course, hadnt showered, I was lucky to stand for a minute. That Dr treated me like an addict. She refused me even IV fluids. I went back a few weeks later, chewed her a new one and gave her a copy of the letter I was sending to everyone I could think of.

If Drs would just stop and listen with their mouths closed, a lot of us would get better. Lyme is the only illness that I can think of , that Drs want to see a positive test to treat, but then argue that the test was a false positive. No other illness can do that.

 

[RainSong]

It's aweful isn't it! i hate being tired all the time and i'm SICK OF BEING SICK. if it's not one thing it's another. it really seems ot have attacked my immune system and i get flair ups of shingles, ulcers on the cornea of my eye... and about anything going. really stinks! as if it's not bad enough with all the other stuff ontop! I really wish there was more focus on research and funds going towards it!

I am too. I know loosing weight would help me feel better too, but how the heck can I do that when I end up barely able to MOVE? I'm sick of always hurting- Something ALWAYS hurts, and everyday life makes it worse. I feel like a complete whiner when I tell people I can't vaccum, or that chopping veggies makes my hands hurt. It's that whole invisible disability thing- I look fine, so I must be.

Stress kills me, and it's constant anymore due to living situation. My psorisis (sp) has gone crazy- my legs look like patchwork of a very ugly nature. It seems anymore that if it's not allergies, it's a cold, or my sciatica, or another episode with my hands, or.. or or...

Just another reason to try to go to school. Then, maybe I can work... maybe I can get a mini, after we've got our own place and all. Maybe. Honestly, I wish I had more incentive- "maybe" gets thin after awhile- I wish I could touch it and say "You will be mine".... of course, then I'd be having from horse time

I -always- feel better for WEEKS after I have some horse time. Mentally and physically... why? I have no clue.

There should be more research being done... but I could say that about a lot of conditions, sadly. Seems there's never enough people and money!

A note about Lyme testing. Tests stink, to say the least. The Lyme bacterium isnt present in the blood at all times, nor are antibodies

Lupus and RA are the same way, really. You can have it and test, and get a false negative. My physical therapist last year had RA. She tested once, came back negative, was tested again later... and came up positive.

Fibro is still dismissed by a lot of Dr's, I've read, because there's no "real" test for it. Just a "clinical diagnosis" based on pain points. Well excuse me if my body is messed up and you don't believe it- doesn't change the fact it hurts to live, practically!

That said, I'm thankful- my pain isn't yet to a severe level. Little by little, yes, but right now I'm still mostly functional.