Fibro diagnosis ?

Hi, my name is Jenée. I was diagnosed in the fall of 2001 when I was 17 and still in high school. I had been sick and I could not turn my neck, and passed out so I went to the Dr. to be tested for a ton of different things. Eventrally I was sent to a Rhematologist at valley children's hospital and was diagnosed with FMS after being tested for an array of things including Lupus. Basically there are several different pressure points in your body. There are 18 specific spots that they push on to see if you are sensative in those areas. I personally had increase sensitivity to 17 out of 18 the most he had seen. In the end that Dr. told me that there was nothing that he could do for me. There are no traditional medical tests that can diagnose FMS.

I am now 22. I have sleep apnea (which is when you stop breathing when you sleep) this stops me from getting into my deep sleep to repair my muscles which leads to fatigue and chronic pain in my joints mostly my knees, hips, and shoulders. I also have IBS (irratible Bowl Syndrome). I have an MRI scheduled for tomorrow because I passed out two months ago and I now have ringing in my ears. All in all, there isn't much medically speaking that can be if you are diagnosed. What I have learned is to make life style adjustments. Getting lots of sleep, eating healthy, exercising, and staying positive. I have my good days and my bad days..

So hopefully you have a good Dr. and can explain to them what your symtoms are. But i am here to support this forum and you can PM anytime.

As you said you weren't familiar with FMS not many people are. So do not take "nothings wrong with you" for an answer. It is a real condition not something that is in your head. You may as I did, have to go to several Dr's before you can get an answer.

My Grandmother was a Nurse and it took her two years to start to believe what I had. And more and more research has been done on FMS.

Also do a search online there is a ton of information about it.

Thank you very much for the info. I have/do have many problems that no one can explain. It is very frustrating. I get the "your young, i'm sure it's not that bad" or "At your age, that shouldn't be an issue". It is very frustrating.

I have recently found a neurologist that is wonderful. He has diagnosed me with trigeminal neuralgia. As bad of a condition as that may be, at least I know what it is. And someone finally took me seriously.

There are still many other problems that have not been addressed. Are you aware of if this condition would have an impact on blood pressure at all? I know its a long shot, I'm just reaching...

Agian, thank you for your reply.

I forgot to ask...Do you know if it is hereditary? My mother has recently been diagnosed with lupus. She has discuss some of my issues with her rhumo doctor and he is interested in seeing me. So hopefully I will eventually get some answers...Hopefully.

They really don't know if it is hereditary. But lupus is. FMS has alot of the same symptoms as lupus, arthritis, chronic fatigue syndrome, among others.

I am glad you that it sounds like you have a good Dr. and lots of people in your corner. I hope your mother is well, lupus is tricky disease but many people live happy, health lives with it.

And by the way, I have heard of lots of people that have been diagnosed with both lupus and FMS. Some of the symptoms overlap.

Good luck and let me know how everything goes.

Jen

Thank you for your well wishes!

I am very fortunate to have a wonderful support group of family.

I will definitely let you know how things go.

Agian, thank you for your help.

I was diagnosed with fibromyalgia when I was 21 years old. That is close to 25 years ago. I also first had the stiff, sore neck which in time became unbearable painful. I would wake up over and over again at night with my neck hurting so bad I would cry. I was already married and had a 1 year old daughter at the time. Next came my wrists and then my knees. It took quite a few dr. appointments and finally a specialist in arthritic diseases diagnosed me.

I also have irritable bowel syndrome, which is common with FMS. I have remissions that can last for up to a year and then super bad 'bouts' of painful joints and/or IBS.

My Dad has been diagnosed with Chronic Fatigue Syndrome. Perhaps my FMS is inherited? I also have a sister with IBS but she does not have FMS.
It's a very painful disease, hard to manage and treat and also hard on you mentally and emotionally. I haven't found anything that really helps a lot but rather a lot of things that help a little bit!

Thanks so much for sharing.

I completely agree. I have found the same thing, that there are alot of things that help alittle. I go through phases too, where things are great then I start to flair up. Right now, it's bad. Mostly the stress from school, work, boyfriend, ect.. which starts to add up and take a toll on my body.. So this week I will be working on chilling out and work on feeling better.

Thanks again.

Fibromyalgia is a syndrome characterized by severe muscle pain, tender body points, disturbed sleep, depression, fatigue, and anxiety. It is often difficult to diagnose, because symptoms can vary in severity and mimic other chronic conditions such as Chronic Fatigue Syndrome and Lupus. Approximately 3.7 million Americans suffer from fibromyalgia to some degree, and about 90% of the cases occur in women.

Doctors seem to do a pretty poor job of dealing and treating this condition...I hope for your case it is not, I am a Fibro sufferer but I have found some success in combatting it.

# Alternative therapies such as acupuncture and biofeedback have proven to be helpful.2
# Join a support group that deals with chronic pain.
# Try therapeutic massage. Look for a massage therapist that specializes in pain disorders. Getting a traditional, deep-tissue massage from a health spa may end up being extremely painful.
# Try meditation, guided imagery, relaxation, and breathing techniques. These are all great techniques for coping with pain.
# Do whatever it takes to avoid stress in your life. The symptoms of fibromyalgia are severely aggravated by chronic or high levels of stress.

Fibromyalgia can be a very disabling disease that even medical doctors tend to minimize at best. Few people can understand that even modest pressure on a trigger point will cost that person pain for weeks.

The info posted so far is a good starting point for you. You should be aware that Fibromyalgia and chronic fatigue syndrome tend to run hand in hand although finding relieve from the fibromyalgia is usually easier.

Symptoms can be relieved by maintaining a strict diet that eliminates the foods you may be sensitive to. Some people find supplementing with malic acid / magnesium supplements help dramatically. Eliminate wheat and gluten from your diet generally helps all that are afflicted - but it takes up to 10 weeks or more to really see the difference. Cheating starts the clock all over so if you try it do 100%. Probiotics may help some people, try drinking Kombucha tea. Brew your own and save big money you can get a starter culture.

Sleep does make a difference as well, consider trying L-theanine (from green tea) before bed it really helps you get a better nights sleep. Vita cost is as cheap and good a place as I have found to get it although it is available at most health food stores - just don't confuse it with L-threanine No "r" in the right one.

God bless and good luck!

In my case I started getting worsening insomnia last October. In November I developed increasingly intense pain in my upper back. By December it was in my head and shoulders. I saw many, many doctors and all the test came back fine, fine, fine. They finally decided I had depression and I saw a psychologist who told me up front that my pain was real, genuine, physical pain and not pschosomatic or the result of depression. Shortly after that I developed pain at the trigger points of fibromyalgia.

It is treatable. I am taking Neurontin and Cymbalta for the pain and Temazapam for the sleep and am now relatively functional again. Each person seems to be different and it took months before I found medicine that actually helped me. Don't give up.