Do I have Fibromyalgia? Post your stories...symptoms...how you cope..

[lovemychicns]

I had mine tested in December. It was just a little low, and I just had another draw Tuesday. Won't find out those results until next week.

 

[Sierra pachie bars]

I had everything tested. All my levels everything. Many times over. I do have thyroid issues as well so that's why it was over looked for so long.
They thought I had MS and Lupus. Lupus is tricky so I still get that tested often as well.

 

[Wifezilla]

Define "a little low"?

"levels should be above 50 ng/ml year-round, in both children and adults. Thanks to Bruce Hollis, Robert Heaney, Neil Binkley, and others, we now know the minimal acceptable level. It is 50 ng/ml. In a recent study, Heaney, et al expanded on Bruce Hollis's seminal work by analyzing five studies in which both the parent compound (cholecalciferol) and 25(OH)D levels were measured. They found that the body does not reliably begin storing cholecalciferol in fat and muscle tissue until 25(OH)D levels get above 50 ng/ml. The average person starts to store cholecalciferol at 40 ng/ml, but at 50 ng/ml virtually everyone begins to store it for future use. That is, at levels below 50 ng/ml, the body uses up vitamin D as fast as you can make it, or take it, indicating chronic substrate starvation—not a good thing. 25(OH)D levels should be between 50–80 ng/ml, year-round."

 

[Sierra pachie bars]

I was told my someone who does nutrition to have my Vit. D levels checked A long time ago. She told me how important it was. So at least out here where I am they do check it , but she did say many doctors don't test for it. Funny is they often check the thyroid too. I get mine checked at least every 6 months.
I am also very blessed my doctor is one that does some of the help with research for FMS. I thank God for him. He is great. He watches me , I see him at least one time a month. He is very supportive.
I also try my best to eat well, I eat organic as much as I can growing many of my own fruit and veggies. I try to at least help my body. I hate what FMS has taken from my life. I also need to realize it has also hurt my family because they lost the mom they once had. I was so afraid my husband would leave me , because I felt so flawed.
I live one day at a time.
One thing that was very bad for me was Lyrica. I had such a bad reaction to it. There is a new medication just approved and my doctor is working with the company to get me samples and then going to get my insurance company to cover it. I am currently on Cymbalta. I take Lynesta to help me sleep. I took Ambien CR and was sleep walking. My service dog would go get my husband and I never made it near the stairs. My husband said he spent many nights putting me back in bed. He said I was doing weird things and Milo would get him and alert till I was back in bed.

 

[crtrlovr]

Quote:
I use Ambien with no problems, but my sister has had some strange side effects such as you mentioned. She has EXTREME RLS
and has a tendency to sleepwalk. (Probably because she literally goes DAYS sometimes w/o significant sleep -- maybe 2-3 hrs. a night, 5 if she's REALLY lucky). She does fine on the Lunesta, but has no insurance and cannot afford it. She can take Ambien for a little while, but if she takes it for more than just a few (2-3, maybe 4) days in a row, she starts sleepwalking. She walked into a doorframe so hard it blacked both her eyes and cracked her nose. She has gone outside in her pajamas, no shoes, with car keys in hand, going to go "to the store", all while absolutely, completely asleep.

 

[PlumTuckered]

I have Fibro and it is a real struggle to deal with. Six years ago I saw an Endro., had all kinds of tests done in the hospital at which time he was talking about removing the goiter in my neck. At the end of those tests (after insurance paid their portion we ended up paying almost 7,000.00) he decided not to remove the goiter, put me on Armor for my thyroid and said that I may possibly have fibro. I asked questions and got no answers, I trusted him.
Almost 2 yrs ago I started having major numbness in my legs, arms and face then came big dizzy spells, I even passed out in walmart a couple of times. Once they ruled out any problems in my brain my family dr sent me to a Rheumatologist, he then put me in the hospital for all kinds of tests (ruling out PAD, Lupus and I can't remember what all), he diagnosed me with fribro. I was put on flexerill for the pain, a neuronton (spelling?) to supposedly work on the signals coming from my brain, 800 milligrams of ibuprofin and prilosec. I stayed on those drugs for 2 yrs even though I couldn't function, I still had pain just not as much, I couldn't think, couldn't keep a train of thought going more than a few seconds and lived like a vegetable compared to my normal way of life. Last july my heart started racing contstantly, when that wouldhappen my blood pressure would go up, then I'd have an anxiety attack..this went on for a couple of weeks before I ran to the hospital thinking I was having a heart attack. After heart stress tests the Cardiologist said my heart was fine. Family Dr. put me on a beta blocker and it seemed to be helping once I quit taking all of the other meds. Shortly after I tried Lyrica, couldn't deal with the side affects and quit it. A month ago the goiter in my neck started growing even larger, the past week it has given me fits, can't sleep at night because of the pressure along with leg pain and restless legs. Tuesday we were in walmart and I felt liek the goiter was pushing down hard on my windpipe, voicebox and cutting blood off from my head, big dizzy spell and over I went. Yesterday was spent in the hospital, no new ideas but they gave me a script for something called lorazepam which helped me sleep last night,and I was given the number of a new Ear,Eyes,Throat guy. I see him on July7th and I hope he's willing to take this dang thing out of me. Maybe then I can move on and figure out how to live with the fibro.

I feel so bad for all of you going through this, it's hell, it's hard when your family just doesn't get it.

Hugs to all of you,
Michelle

 

[Sierra pachie bars]

My insurance refused many times to pay for my Lynesta. My doctor got on the phone with them and after some time he got them to supply it for me for a year. I do pay 35.00 co-pay which is cheap because it is very costly.

 

[Livinzoo]

Has anyone ever taken magnesium for the pain. I don't have have FM but am hypothyroid and have bad TMJ with migraines. The pain was so bad that I actually asked a dr to remove my lower jaw. Went to a specialist and he recommend a mild antidepressant and a bite guard. The meds made me fall asleep while driving and the specialist couldn't do anything else. Later I found out about magnesium and I will say that I can not live without it anymore. I rarely have pain and if I do it is because I forgot the magnesium for a few days.

PineBurrowPeeps
Quote:
Check out http://www.stopthethyroidmadness.com/

Many people with symptoms that test "normal" actually respond well to medications.

 

[Rolsjo]

Quote:
I have taken magnesium without much change, but I have heard it works well for others. The one mineral that has helped greatly is manganese. I have much lower pain levels with it.

I have been taking a natural thyroid supplement (Standard Process Thytrophin PMG and Iodine) since October and have noticed a huge difference in my energy level. That link is great and I can tell you that my thyroid tested totally normal for 20 years, but was not normal. I get my supplements through my chiropractor and they are well worth it.

Wifezilla, I have had my vitamin D levels tested and they are normal. But, my SIL thought she was starting with fibro symptoms and she is Vit-D deficient. It is a very real and common problem and you're right, it is often diagnosed incorrectly as fibro. I now know 3 people that are Vit-D deficient and thought they had fibro or MS. Thankfully, they had good doctors.

 

[Wifezilla]

Yes....a good doctor can sort things out quickly. The bad ones can make you miserable for years for no reason.