My friend has fibro and she keeps telling me in e-mails that I sound like I have it. I don't know much about it - what are your experiences, and what are some good online resources?
For as long as I can remember, I have unknown pain in my joints, especially my arms and hips/lower back. It is aggravated by cold. My doctor took X-rays of my hips but there was no evidence of arthritis. Some days I just ache and ache, but others I'm okay. I don't have a high energy level. I get a lot of tightness in my shoulders and neck, and headaches. Do these have to do with fibro?
Sorry this is so scattered; I don't know what to describe to you.
Tell me about fibro?
It is very hard for anyone to diagnose fibromyalgia. Sometimes this can only be done by process of elimination.
Your Dr. is your best bet.
You do have symptoms that COULD be fibromyalgia, but they
could also turn out to be something else.
A Dr. that has any experience with fibro will be able to diagnose it by checking for specific pressure points, there are 18 on the body. But all other diseases should be ruled out first. There are many good books on this syndrome. If you don't want to spend the money....try the local libray. There are also many fibromyalgia web sites.
Just hit search.
Good luck to you and I pray you DON'T have it.
Kathy
Oop! Forgot to tell you...:*)
There are two threads under health on fibro. The first
one was so long...they started a new one. Read the first one first....and then there is a hyperlink that will take you to the second one.
Mingsmimi emailed me and told me about it.
Come over and visit
Sounds to me that you just need some good chiropractic care
Gardenwife, go to "trying to get caught up" I wrote something there that mite be helpful.
Flowox, I have spurs in my neck from a chiro. be careful ladies. Deep tissue massage is the only thing I am suppose to have done, it's wonderful, it works, and it's expensive ;-0
Gardenwife, there are trigger points as someone mentioned. I was finally diagnosed through a neurologist all he did was touch me in these 18 spots ( I think it's 18) If it's painful; it's fibro.
Your discription is not scattered and the cold thing is a dead giveaway. I was in Vegas visiting, for the last time, my cousin, who was ill. He slept on one side of the couch I on the other. He looked at me and said, "Hey who's sick here you or me?". Go out; have fun. I said, "John the weather is killing me" It was March and just windy, you only needed a jacket but it put me right on my behind. I don't want to scare you but if you find a good neurologist and rheumatoid dr. you'll be OK. DON'T LET IT GO!
Gotta rest. Saw your post the other day and just wanted to respond.
Later guys
I'm sorry for saying this but if we all freaked out about having joint aches, which I have plenty of, and stiffness in the neck and shoulders, which I have every day...........and thought we had fibro, then I guess most of us here have fibro. I'm not saying don't have it checked, but I would go to a doctor to have it diagnosed rather than researching all over the net about it and saying "yeah, those are my symptoms".
I did that with Bipolar disorder and believed that's what the problem was, especially after one of my therapists said "yeah, sounds like it" Talk about a wrong diagnosis. I got my diagnosis 3 weeks ago and it's recurring major depressive disorder, which is chronic and I have to take meds for the rest of my life but at least I have the right diagnosis now. Your brain can make you believe lots of things if you let it
Thanks for the information, everyone. I don't think I want to go to a chiro after all. Two friends of mine have to go back weekly to the chiro; to me, if you have to keep going back like that, the problem is not being addressed. Maybe that's not what happens with all chiro's, but it makes me wonder how effective the treatment is if it has to continue forever like that. My hubby's niece is a physical therapist and she said she's had to treat patients who were messed up from chiro care, so she's obviously not a fan. But I'm all for massage therapy and such; Howie's niece said if my doctor prescribes it and it's done at a PT place, my insurance would probably cover it, too.
Kimberley, I would not give up on chiropractic so casually. As with doctors, there are good ones and bad ones and so-so ones. I am fortunate to have found a good one years ago. I haven't been to him for several years, but I am so glad to know he's there with his magic in case my back slips again. So much of the results you get from any treatment depends on you. If I just went to the chiropractor for an adjustment for my scoliosis and then sat around like a dead toad, I would surely need to go back often, because my muscles wouldn't hold my spine in place as they are designed to do. But I have made it a point for the past 42 years to keep my back muscles strong so my "S" curve won't cripple me. I lost a lot of muscle tone and mass during chemo, and I could tell a big difference, but I am working to rebuild it as well as a woman my age possibly can. It's up to us to use common sense in caring for our bodies, but a good professional can certainly smooth some of the rough spots in the road of life.
Just wondered if you get good restful sleep.
People who have trouble sleeping or people who don't get
enough deep sleep can also have pain in these trigger points
until they have become rested. Testing was done on "normal"
people and those that have fibro. The difference is that the ones with fibro never get rid of it.
Need a good Dr. to puzzle it all out for you.
Kathy
REM sleep is the most important thing to live and feel healthy.
I have not gone into REM sleep in many, many moons that's one of the reasons I have fibro.
Also I highly suggest the book by Phylis A. Balch and James. "Prescription for nutritional healing" as I stated on the other post. It's on sale for 11.00 at The Vitamin shoppe. They explain my systems of fibro to a T.
Seems I have had this condition since I was 13 undiagnosed. As I stated, on the other post:
the authors owe me rights on this book. I have had everything that they describe at one time in my life or another.
I don't want to get controversial but I truly suggest massage therapy before anyone plays with a chiropractor. If the Chiro. is bad it is irriversible! I have spurs in my neck from one. It's a long story but just be careful
READ. READ. and than READ somemore.
Go to a library if you can't afford the books but READ before you try any meds, nutritional healing or any alternative medicine.
I just read today that St. Johns Wart can hurt the Kidney. Well my kidney is weak!
Also, xanax is bad for patients with glucoma. The pressure in my eyes is high.
Who knew! You must keep up on all this stuff.
Leg cramping OMG. Arms twisting in. Yes, I have an advanced case but if you don't nip it in the butt you TOO will have an advanced case.
I thought it was a funky condition until I had to get my father's quad cane out. :-(
Be careful is all I am saying!
And as my principle in HS would say on the intercom every morning:
"A word to the wise is sufficient"
Good Luck
God Bless you and yours ( yours suffer along with you, trust me)
Bye
JMHO
Carol I know all about REM as I too have not gone into that stage for as long as I can remember. I had a skull base fracture when I was 5 though and they seem to think that that may have disrupted my sleep center. It's horrible to get up and not feel refreshed ever :(
Sleep?????????????Anymore than 2 1/2 hours I feels like I slept the day away LOL
Dr. says in bed at 9:30 no TEEVEE; read. Yes, of course and in a perfect world my ma----seur would be there in a tong with wonderful oils to relax me so I can sleep. However, the more things I try that he suggest the more I know why he is the best. They work. I just am not a pill taker had the thought of loosing my liver or kidney to that stuff I can think of much better ways to do that than with pills.
Did anyone ever suggest to you clonozapam (aka xanax) in .25 doses for sleep and relaxing the muscles. I'll be a monkey's uncle it's working. Still don't like taking it but I found that if I follow his instrux. it works. Got 3 hours this afternoon after a real busy day in NYC yesterday. Something to think about. I AM NOT a promoter of drugs EVER especially addictive ones BUT............if it works can't fight it.
I would rather garden with a smile than with a Yawn ;-)
thanks for the advice Carol. will ask the doc next time I see him. It's prescription right? Thanks :)
Yes, it is prescription but cheap if you get the generic for any of us that don't have coverage. I am fortunate, I do.
Hope it works; only you will know for sure.
I take valerian root extract; it's something like $3.99 for Nature's Remedy brand and is a month's worth. A name-brand with that main ingredient, along with hops extract, is Alluna. But that stuff costs an arm and a leg, something like $9 for way under a month's worth!
The hops is available as an herbal supplement, too. Just the valerian alone really helps me to relax and I notice sleeping much longer intervals, and more deeply, when I take it about an hour before bedtime. It's non-addictive, too, which is cool.
Gardenwife, Sorry I fell off the face of the earth but I had to deal with the Bleek bulbs. It was a 3 way split and someone is backing out ARGGGGGGGGGGGGGG. Looks like my trusting soul got bit again. I will offer them for swaps for blackie and trailing snaps. Oh well, live and learn but I never seem to learn. And so it Goes!
I have valerian root here but I was told not to mix it with St. Johns wart which I take. This can get very confusing! I will try anything at this point. How many mg's do I take of the Valerina Root? I have 1,000 mg.
I've been on DHEA since Feb and that is helping the Fibro Fog. I feel like I can start trading again. DH is going nuts cause I'm back to multi tasking. He does one thing at a time very anaylitical.
I'm going to the V. Store tomorrow so I will do my reserch there. LMK if there is anything else I have to check out.
Oh on the DHEA take the K-DHEA. I made that mistake. Seems the plain one can cause B. cancer and P. cancer.
I hope you have a great sun shinny day. Ilove it today!
My best
Carol
The valerian I take is 1060mg per 2 capsules. I read in Reader's Digest that St. John's Wort and Ginko Biloba can disrupt birth control, so I'm steering waaaay clear of them! ;) I'd NEVER get any sleep at all if we had kids!
I have had FMS for 27 years (was diagnosed with it in 1989-when it was first recognized as a disease), I believe I got it after I had mono--I never really recovered from it.....I have chronic migraines, low blood sugar, low blood pressure, aching joints, dizziness, loss of appetite, frequent sore throats, sometimes run a low grade fever, overwhelming fatigue, massive sleep problems, forgetfullness.
KBlueberry, I had mono, too, in 1975, and never felt like I recovered fully. I have long suspected that most of my problems could be traced to one or more virus type organisms. In early adulthood, I kept getting measles, even though I had it when I was about 9 years old. If my kids or a neighbor's kids got measles, so did I. So many times I felt like I had flu, with many and slightly varying symptoms. My stomach distress is quite viral in nature. You might have touched on a real useful truth here, if only someone knew what to do with it.
I contracted mono my freshman year of high school. Get this...Failed Health Class because of it. When I think back, I don't believe I had the IBS problems until after I had it. Wonder if there's a link there. Weird!
I started going to a chiropractor Friday - will see if that helps the lower back pain and the neck and arm pain I've had so much of. The X-rays showed evidence of past injury in my cervical spine; I did fall from a horse when I was in 7th grade, but I can't think of any other neck trauma unless it was something that just felt like a jolt sometime. We'll be reviewing my X-rays and talking tomorrow, so I hope to know more then.
Will send up some prayers for you Gardenwife
i have fibro
I got it after catching a rare virus linked to ross river fever.. its only over here in austraia and was passed on by mosquito's. its passed now and no more cases are evident but i was ill for months. I had post viral fatigue which is like CFS.. but i was left with fibro....
i go to my chro when the muscle spasms get to bad and she puts me on the ultrasound machine and gentle massage and they stop spasming.. she doesnt crunch my bones!! nooooooooo thats not too good a thing..if they are good..they should do otherstuff too.. if i have a joint mis allingned she uses an activator.. its small and painless and doesthe job. my headaches are gone thank god as is my limp.
the fibro comes on when i am stresses and upset and can be effected by cold but more often in the heat or humidity.. its no fun.... i hope you dont have it...
and yes it is hard to diagnose....
good luck
Carol--I love the book by Balch and Balch--I followed the FMS recommendations for the past 3 months...the supplements that seem to work for me are NADH 10 mg., MSM cream (for MILD joint pain) and melatonin 3 mg...I spent about $600 that was for about one month of supplements as recommended in the book, I even did the B12 injections-bought the recommended brand names and the whole 9 yards.
I don't take any RXs for pain, and that was one of the big problems that the book didn't help, but fatigue and sleep was helped a bit by what I mentioned above! I didn't feel $600 better though!
To All You Gals..................great news and a great book for us to follow or at least think about.
Sorry, again I feel off the face of the earth. This time DH decided to jump on the bandwagon.
I will address his illness later new info on fibro, very new it's been out for awhile I just chose to ignore it like a fool.
The book "what your doctor may not tell you about Fibromyalgia" by R. Paul St. Amand, MD and Claudia Craig Marek. The revoluntionary treatment that can REVERSE the disease.
They use Quaifenesen. The author, male, has had it being a dr. he developed this breakthrough. Not many people know about it. I haven't finish this comprehensive book but it seems that Salicylates contained in makeup, lipstick and many over the counter everyday things we use contain it which causes more trouble for us. I will address this treatment with my fibro guy when I see him.
Due to Dh's illness I had to cancel both appointments with my fibro guy in Phila but I will be going as soon as he can drive and I get an appt.
This book is amazing just amazing. There are symptoms out there that I didn't even know exsisted like vulvar pain caused by acid. Therefore, Vitamin C can cause this condition. So even some of the natural things are not good for us. Please Please I urge you to get this book it is 15.00 at Barnes and noble but a search on the internet may find lower cost or go to the libraby. They go into such detail on Fibro Fog which has been one of my biggest problems. I've been taking DHEA out of desperation. I know it can cause breast cancer I should be taking the K-DHEA which I will immediately because of the poor reading on my mamo.
There have been total reversals of this disease if you follow the regiment which for me will not be easy but hey, this Fibro and CFS is not easy. BTW the DHEA has surely helped my cognitive state. I can almost successfully multi-task again. Recently, I've even been able to follow the stock market which was totally out of reach for me. That was my livelihood for 25 years. Now maybe I get back all the $ I lost with the grace of God and this bad stock market.
I lost everything due to this illness and many friends along the way. It is diffcult for anyone else to understand. Even my sister who has Lupus can't understand why I was sick from October til Jan. and Again for Easter. So I missed our Christmas Holiday and was late for Easter Dinner only to listen to my brother in law call me ignorant for making them wait. Even the family doesn't understand.
That's just the way it is but I'm telling you all NO MORE. GET THE BOOK PLEASE!
I could write all nite about what he addresses but for now go to some of these sites which are in his book:
Fibromyalgia Wellness Group in NY www.Gold222@aol.com support group
The "Guai Support Group" this is a private semi-moderated support group for anyone intersted in the quaifenesin protocal and hypoglycemia. Also provides Salicylate information To subscribe send and e-mail to LISTSERV@MAELSTROM.STJOHNS.EDU and type Sub Guai-Support (your first and last name in the body of the e-mail. It was founded by Tesa Marcon in Oct. 1997. 600 +members in all stages of recovery.
www.geocites.com/HotSprings/Spa/5252 "Official" support and info for Guaifenesin protocol. Site contains updated cosmetic lists, success stories, doctors lists, etc. Appropriate for doctors and patients.
The authors websit www.fibromyalgiatreatment.com. Guaifenesin treatment jpdates, refferal lists, and links
Fibromet by Anancy Medeiros: www.csusm.edu/public/guests/nancym/fibromt. A patient oriented web site with folksy look. Offer video tapes and information for sale.
There are videotapes avail. at differnt sites.
Success stories with this new treatment
Guaifenesin Sources
This book even provides a list of cosmetic company customer service phone #'s and web sites.
The resources section in the back of this book goes on for pages. I have provided you with a place to start even before you purchase the book which I am sure you all will.
Hypoglycemia is a problem for us www.hypoglycemia.com or
Low carb diet is necessary recipes: www.lowcarb.com
Low carb resourse center: www.thinner.com these are just a few I don't want to overwhelm anyone. If you cannot reach a site you want please e-mail me and I will check it out for you. I am too tired to proofread this.
As for DH:
His homosteines were 21 the high is 11. His blood pressure was off the charts and we was scheduled for cataract surgery. He had the surgery on Monday and is doing fine. I stopped taking his pressure it was driving us nuts with the digital. I will be trading in for a regular one. Through this my pressure went balistic and my pulse................. forget about it. Anyway, now that he's taken care of I had a bad mamo reading and must go for a sonogram. I am in good hands though finally. The eye surgeons wife took me under she wings. She's a dermatologist and very well connected with some of the best dr.'s in NY. I always said, "it's not what you know it's who you know". I go for the ultrasound Tuesday and it is inevitable I will need surgery AGAIN!
I haven't been on DG for sometime so please if you need any further information e-mail me directly and I will get back to you in a more timely fashion.
My garden is growing in spite of all the problems. I have been so neglectful with all that has gone on since April but God is good and doing a lovely job. I have lost many plants but now things seem to be coming back. My bulbs are still sitting they will probably bloom in the bags but we have to address what is necessary at the time. Right now our health seems to be the neccesity of the months or should I say months.
God Bless you all and have a great summer. I hope to be around now and than.
Carol
So what they're using to treat fibro now is guaifenesin, the over-the-counter expectorant? I take a prescription-strength guaifenesin/pseudophedrine tablets when my sinuses get really bad. Weird! Thank you for the info. I hope all turns out well from your tests, Carol, and that both you and your hubby have swift recoveries. :)
I have this book Carol. And I found it very interesting reading. Let me know how this works for you if your Dr approves.
When I take expectorant....with guaifenesen....I end up in a terrible pain cycle. So I know that much is true. But the time it would take to completely reverse it...per the author of this book...is about 5 years for me. Not sure yet
what my Dr. thinks of this method. The Arthritis Foundation
is not recognizing it...and they monitor fibro.
I will be interested to hear what your Dr. has to say.
Thanks for you good wishes. I see my Fibro guy on July 2nd.
I had my first breat surgery in 1980. In recovery, I said, "I told you not too..........." He said, "I didn't it was just a fibro cystic tumor that I removed. I said, "why does it hurt like this? Give me something for the pain now!" He said, "what do you expect. I cut through 3 layers of muscles. You can have something as soon as you come out of recovery".
I immediately got off the bed and said, "ok, now give me someting". He said, "NURSE!!!!!!!!!!!!!!"
My husbands eye surgereon and his wife the dermotologist have taken me under their wing. I am scheduled to see the head of Breast Surgery of Cornell. He too promises "NO PAIN".
DH's eye is fine. He now can see me good in one eye. I hope a divorce is not in the making here LOL
His other conditions....well, his doctor just keeps adding to them.
We are juicing it now. I imagine this will help both of us.
BTW, ladies, for vitamins check out Nutrition Headquarters Puritan's Pride I found an offer of 3/1. Real cheap Toll fee 1-800-851-3551 ask about the 3/1 offer the # on my catalog is
452
1301832505
Than on the far right Pt12 P7. If you need my last name for this offer just give me an email before next Wednesday.
If you have a few prayers hanging around that you have no place to send them. We would sure appreciate them.
God Bless
Carol