| T O P I C R E V I E W |
| 82kygal |
Posted - Dec 01 2009 : 04:58:38 AM
I would like to know everyones opinion on these two diagnosis. I know they are very controversial. My husband has been diagnosed with this and I know a lot of Dr.s and people in general just think it is all in a persons head. I asure you whatever he has is not in his head he has been off work since May, in the hospital seen a million Drs. then we went to a rhumitoid Dr. and he said right off the bat thats what it was. It all started with a little tick bit. (Rocky Mountain Spotted Fever)
Thanks for the imput ladies.
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| 25 L A T E S T R E P L I E S (Newest First) |
| lilwing |
Posted - Jan 23 2010 : 6:09:26 PM
B-6 can quicken the progression of the muscle atrophy (for some reason) .. There are some other things too. I just saw Prilosec on the list for heaven's sakes! I have taken that!
Kyria, I was tested for lyme disease and they did say that it was negative, but this was the Fibro and Fatigue Center in Dallas
Texas. I think the place is a sham personally (just for anyone who may go there). They had me do 41 blood tests (I think if I can remember correctly) in one day....and they had me on all sorts of pills and had me taking heparin shots in my stomach (my husband did it) two times every day. I was in a very bad way and had some sort of overdose on the heparin and stopped completely... and never went back! So if any of you are looking into things like that..be careful of that place! (They have them all over the US)
~~~~
Proud Farmgirl #775
http://maggielousdaughter.blogspot.com
(in construction!)
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| Carol Sue |
Posted - Jan 19 2010 : 1:42:44 PM
Laura, good idea to check that. I was checked for that one, nope not it!!! Fibro.....lol. Hey you have to laugh at times with all this or you lose your sanity!!!!
Also, that you are the support to him that you are, that you believe him, that you are willing to do the hunting down info makes a huge difference to him.
www.Quitemoments.blogspot.com |
| 82kygal |
Posted - Jan 19 2010 : 06:36:23 AM
Funny you should mention that Kyria, my husband has said that many times but Dr.s just say no its not that. How did they finally diagnose you? What did they do to treat it? At the same time he was diagnosed with Rocky Mountain spotted fever my dogs both got diagnosed with Lymes (the same week). Thanks for the great info.
Laura
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| Kyria |
Posted - Jan 18 2010 : 10:37:18 PM
I only skimmed through here because it's late, but I didn't see anyone mention Lyme disease. I would urge you to check into it, but you'll need to find an alternative dr. who either knows about it or is willing to learn. Mainstream MD's are drummed out of the profession if they try to pursue that diagnosis. I've seen it happen.
I was diagnosed with fibromyalgia & suffered for 7 years before we discovered it was Lyme's, which can mimic lots of other illnesses. So it's just a suggestion for you to look into.... |
| classygram |
Posted - Jan 18 2010 : 06:40:32 AM
I am so glad that I came across this information. I have had fibro for many years, the last five have be the worse. I was taking care of my 85 yr.old father during his fight with cancer. And it seemed to increase with time. He has been gone 4 yrs. and now taking care of mom. My husband just lost his job and we have been living week to week. So you know the stress this can be. But I keep going everyday the best I can. The problem is people look and you and see that you look well, so they can't understand why I'm not working and taking naps everyday. Like I'm just lazy! Believe I'm not lazy as you all well know by your experiences. There are days that I can barely move and do what needs to be done. But one thing for sure is, I've been blessed with a wonderful husband, so supporting. I don't know where I'd be without him. Laura just know that dh appreciates everything you do for him. And I'm glad that you have a place like this one that you can come to for information to help you out. I have found that in the summer when I can get in my daughters pool it helps alot. I feel deeply for all of you dealing with this and I'm so pleased that there is a place we can come together and help each other. Let's just keep writing so we know there is someone there that does understand us. My prayers go out to each and everyone.
classygram/Brenda |
| 82kygal |
Posted - Jan 18 2010 : 06:14:40 AM
Hi Carol Sue, Once again thanks for the great info. Nice to have you gals to talk with.
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| Carol Sue |
Posted - Jan 17 2010 : 10:25:39 PM
Fibro sucks, no two ways about it. What works for one person will not necessarily work for the next person. Each individual has to find the coarse that will work for them. Thus the frustrating part for the patient and the doctors trying to figure this disease out. Helpful place to go for info is National Fibromyalgia Association. They are on facebook as well and have a discussion board, asking questions and finding out what works for others. Having others who have fibro sharing helps, for one, you know you are not on this journey by yourself. Two it gives you ideas to try as well. Being armed with questions and ideas for the doctors also at times helps them too. If it wasn't for my fibro friends, I would not have known about Neurontin, Cymblata and tramadol. Their suggestions gave my dr and I some jumping off points. Keep talking, keep listening and find a support group if you can because they are out there too.
www.Quitemoments.blogspot.com |
| 82kygal |
Posted - Jan 16 2010 : 4:38:42 PM
Brooke glad to hear from you. I am learning so much. Most of all it is just (sad) but nice to know we are not the only ones going through this. It is the most frustrating thing we have ever gone through. I feel for you and everyone else that has to deal with this crazy disease. Are you taking any meds for it? What does B-6 do to you? We are just taking it all one day at a time.
We went out on a date today out to eat but we had to do it lunch style because dh is tired and sore by 4:00pm so I just take what I can get and when. LOL! But it was a great day. We haven't done that in a long while. I hate this stuff.
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| lilwing |
Posted - Jan 16 2010 : 2:58:16 PM
Laura, I can't over do any exercise and got to be careful. The muscles atrophy.. meaning.. they won't regain any strength..they keep getting weaker... my toes curl up as well as my little fingers...sounds worse than mine is... well, it can be REALLY bad for some... I'm not sure how bad I am to tell you the truth but I can hide it..I consider myself to be on the worse side of mild... LOL... maybe medium? I have to be careful with vitamin b6 (having too much) and a list of other things... my muscles cramp badly as well... so mix that with the fibro/cfs and/or arthritis (I can't tell you if it is all those things or all the same, to be perfectly honest, because the muscle atrophy has pain too) ..... and it's a pain in the.. you-know-what!
This is the most I've talked about this online. LOL.
~~~~
Proud Farmgirl #775
http://maggielousdaughter.blogspot.com
(in construction!)
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| sherrye |
Posted - Jan 04 2010 : 10:37:19 AM
i know from my exp. that many who have fibro or cfs also have sleep apnea. i am not over weight at all and many of my dr.s said no i could not have sleep apnea. did sleep study anyway. yes i have apnea. i am a moderate level. the c-pap has been very helpful to me. i still struggle with pain when trying to sleep. at least now i breathe consistantly. many folks who have fibro or cfs actually do much better if they eliminate chemicals as in laundry soaps shampoos etc. with fragrence and eat a clean diet. like all us farm girls do.chemical sesitivity is actually a bench mark for cfs. for me it ended up a little different. drugs of any kind always made me sick all my life. no one ever had an explanation for us. 15 yrs ago i was diagnosed with a genetic defect in my liver. it is inherited usually, now they have discovered that it can happen to folks from heavy exposure to a strong chemical during a weak or stressful period in ones life. there is an excellant website that received germanys nobel prize for its research in cfs,fibro,and porphyria.car painters asbestos exposure pesticide applicaters can have this happen to them.i mention this since at least for me getting rid of toxic chemicals in small amounts even did help a lot. i searched for my whole life to try to find out why i was so intolerant to some things.now if i am careful handle stress as best i can i can do fairly well also. this is just a thought. i used to help dr.s with their patients to help them modify lifestyle. folks who have had chemo are a strong candidate for the porphyris. the treatment destroys some of the enzymes required to make red blood cells in the liver pathway. happy days sherrye |
| 82kygal |
Posted - Jan 04 2010 : 05:33:18 AM
Thanks for the input Brooke. It is a very frustrating disease. The wierd thing is I have alot of the same symptoms of my DH like sore muscles and feet swelling of my fingers super tired all the time. My problem is I have a bad Thyroid. Strange how they are so close What does the muscle atrophy do to you?
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| lilwing |
Posted - Jan 03 2010 : 5:34:20 PM
This is interesting! I wanted to check this forum and almost put up a fibro and CFS thread myself to see what others were doing. I have controlled it pretty good for the last two or so years but it is still a HUGE struggle. Lately, my shoulders are REALLY bad and falling asleep is difficult again. My pillows are NEVER good enough. I can't tell if this is fibro/CFS or arthritis... because I can tell when rain comes..the weather affects me MAJORLY... I also have a hereditary muscle atrophy so I don't know if maybe it stems all the way back to that, but I have been told by Drs. I have fibro/CFS too ..sooo.... it's confusing!
There are some new things you girls have mentioned so I am going to look into that. Thank you!
But, yes, this is VERY REAL!
~~~~
Proud Farmgirl #775
http://maggielousdaughter.blogspot.com
(in construction!)
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| coffeemom |
Posted - Dec 19 2009 : 8:36:58 PM
I have fibromyalgia and I take Cymbalta, which really does help with pain, and Trazadone to help me sleep. There is nothing worse than sleep deprivation. I was a zombie until I finally broke down and got help. I really try to live a healthy life. Whole foods, as organic as possible. But there came a time when I just couldn't cope anymore and I needed to be me again! I don't regret it and hopefully I won't have to take them for a long time. But I will as long as I need to to live a productive life. Good luck.
Melody
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| 82kygal |
Posted - Dec 15 2009 : 2:19:09 PM
He hasn't had it yet. It is set for the 23rd of January. I am curious as to what it will tell us. I know he is a heavy snorer and does not sleep well. I will let you know as soon as we get it done. Thanks for asking.
laura
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| vtstevens |
Posted - Dec 15 2009 : 1:39:15 PM
Laura, how did the sleep study go? Only if you are comfortable sharing the information.....
Merry Christmas
I don't suffer from stress. I'm a carrier.
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| ozarkjammer |
Posted - Dec 10 2009 : 11:21:55 PM
I have had fibromyalgia and reflex sympathetic dystrophy for ten years, and fibro is a real disease diagnosed by rheumatologists and approved for disability through Social Security. My husband is a sleep therapy technologist, and I know that low magnesium is one cause for lack of proper sleep.
I find that a combination of neurological suppressors and an antidepressant suited especially for fibromyalgia sufferers, in combination with a whole foods, higher protein diet lessens the flare ups and levels out the daily pain. I also use warm water aerobics at a public-accessible rehabilitation facility with daily stretching...and naps...lots and lots of naps!
I love to see the support here...you go, farmgirls!
Sister number 871 at your service, LOL!
www.chronichope.com |
| 82kygal |
Posted - Dec 09 2009 : 07:09:09 AM
Virginia, dh is scheduled for a sleep test.
Thanks for the info.
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| vtstevens |
Posted - Dec 08 2009 : 1:04:01 PM
Many fibromyalgia sufferers have undiagnosed sleep apnea, which needs to be investigated with a sleep study. You will be surprised when your sleep study is positive. symptoms often remit with beginning CPAP therapy. Talk it over with your doctor and get scheduled for a sleep study.
I don't suffer from stress. I'm a carrier.
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| MaryLD |
Posted - Dec 07 2009 : 7:06:32 PM
Go, Starmeadow!
Haflingers- You can't have just one!
( I'm just one short of a drill team!) |
| StarMeadow |
Posted - Dec 05 2009 : 4:53:19 PM
When I had my first flare it was from a bout of diverticulitis. Man, I was out like a light for months! I slept constantly and still felt like I was not rested... I've been on tons of meds and was seeing an arthritis specialist for the last several years. Still, it comes/goes. Stress is definitely a trigger...and lack of sleep. I took myself off all the meds...they seemed to work/then not work...and the side effects have been awful. My best one though was a cancer drug called methotrexate. But, my skin got dry and my hair fell out. I was talking to someone about it the other day and she said they have meds to help with that too.... Maybe I'll talk about it with my dr. Now I've been dxd with Type 2 diabetes and high bp (both are responding to oral medication)
I think it's funny how drs can say "reduce stress" with a straight face.... If I could quit my stressful job and transform my stressful teen into some moderate behavior....don't they think I would?? It's a hoot really. I just keep plugging along. |
| MaryLD |
Posted - Dec 04 2009 : 09:10:45 AM
Hi Laura,
I looked around on the internet to find a link about gut health and fibromyalgia. What I found was on google books. I can't copy links right now, but I think if you google for "google books The Feel Good Guide to Fibromyalgia and Chronic Fatigue" you will find the book and also the opportunity to read several pages from it.
The idea is there is a direct link between the gut and the brain- the gut processes neurotansimitters. Many fibro people have irritable bowel as well, and that messes up dopamine and seratonin levels, with or without true IBS, in people w/ these symdromes. That in turn decreases pain thresholds, disturbs sleep, creates feelings of unhappiness. There is also the idea that when the gut becomes leaky due to food senstivities, stress,or wrong bacteria, toxins are released into the system, causing inflammation and pain. This can be chronic in Fibro people, and intereferes with nutrient assimilation also- to the degree of malnutrition of some nutrients in some people. Acytl choline helps heal the gut, and also helps reduce cytocine levels ( inflammatory over response in fibro people). This helps reduce inflammation. Acytl choline comes in supplement form. I have to get the name of the one from Neuro Science www.neurorelief.com. I spoke to them and it is very recommended for these conditions. I do not know the price. Acytl choline is also in raw, homemade sauerkraut- a great healer of the gut, of low mood, and thereby of pain. It is in broth made from bones, too.
My hand is sprained and I am running out of steam for typing! I can write again on Monday~
Mary LD
TX
Haflingers- You can't have just one!
( I'm just one short of a drill team!) |
| 82kygal |
Posted - Dec 04 2009 : 07:19:14 AM
Mary great to hear from you. My heart goes out to you and everyone else that has this crazy disease. I would love to hear any ideas that would help hubby out. Also can't hurt me to do it either. I appreciate any and all the great info out there.
With God, all things are possible. (Mark 10:27)
What ever you are, be a good one. (Abe Lincoln) |
| MaryLD |
Posted - Dec 03 2009 : 2:23:35 PM
I can see you have gotten a lot of great responses. I too have fibromyalgia- with a long history of adrenal fatigue due to chronic stress.
Acyetal Choline, found in bone marrow ( homemade broth) and lacto-fermented foods such as raw sauerkraut, can help a lot. Sometimes just some simple homepathic arnica can help, the 30c or 200c tablets as needed. Regular trips to see an acupuncturist can be good, and make a very big difference. I like to use the sauna unless i am very weak, but I do not have use of one right now.
Some would say Fibro is all really a complicated sleep disorder, with the key symptom of non restorative sleep. I suffered that for years. Heavy magnesium doses can also be good. It is said that people w/ fibro do not absorb magnesium properly.
I have not been so on top of taking care of myself, so it's good for me to read these posts!
One of the best treatments I've used was through www.neurorelief.com. They have testing and natural treatment for stress and adrenal related conditions. Right when we moved to TX they came up with a new product I need to check into for chronic inflammation.
I have gotten great relief from cranial osteopathy, cranial - sacral technique, and Feldenkreis. ( Not lately, though!!) It is also really important to balance the gut as most of our nuerotranmitters actually come from there- the " second brain." I can give ideas about that if anyone is interested.
~ Mary LD
TX
Haflingers- You can't have just one!
( I'm just one short of a drill team!) |
| MasterGardener |
Posted - Dec 01 2009 : 9:11:20 PM
It took years to finally get over my chronic fatigue and fibromyalgia...I had been prescribed elavil, gained about 10 lbs in a very short amount of time, so stopped that, and was told exercise and a whole foods "diet" along with extra rest were key. Food allergies can trigger inflamation which increases pain. Exercise improves mood and alters/enhances metabolism and the "good" chemicals in the brain,so low impact (like swimming mentioned above) is vital. Look into adrenal burnout and address that if it's an issue. Stress is usually @ the core of chronic fatigue and fibromyalgia...stress management with whole, fresh foods, exercise, rest, talking to a counselor, they all helped me. Hope you find what works for your DH!
Say to them, may the Lord bless you and protect you, May the Lord smile upon you and be gracious to you. May the Lord show you His favor and give you His peace. (Numbers 6:23-26)
.• ´¨¨)) -:¦:-¸.•´ .•´¨¨))
((¸¸.•´ ..• -:¦:- -:¦:- Chandra
-:¦:- ((¸¸.•´Farmgirl Sister #64
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| Karrieann |
Posted - Dec 01 2009 : 2:42:39 PM
..it is VERY real!
I do not have it but know few people that do and it takes so much out of them. My heart and prayers goes out to them that do have this.
Karrieann ~ Farmgirl Sister #766
(29 Sept 2009) |
