introducing myself

[ptlover]

hello everyone!
I just found your chatroom and thought that you offer a lot of interesting information! Thanks! I live in France, have been diagnosed with FMS three years ago and not only do I struggle with FMS, I struggle with all the doctors who think it's all in the head and FMS is just a name for something that doesn't exist!:mad: I have been given all kinds of medication, but nothing helps and no support to find here, at the pain clinic they told me I just have to learn to live with it! Well I do....after some long months learning manage the problems and the flare ups, I can almost cope....the only thing that scares me a bit is that I feel that my condition gets worse every day a little bit.It is fantastic to see that FMS is considered with "respect" in the US and I'd love to talk to some of you and not feel like a hypochondriac"loony"
Have a nice day and I hope we will get to know each other a bit better:)
Ptlover

[IndySasha]

{{{ ptl }}}}

Welcome!!

make yourself to home. Not all Dr's recognize FIBRO as a ""real"" medical problem.. but more and more everyday!!

I was dxd in 1991 and was fortunate to have a internist that was just out of med school. I have had a rheumatologist who specialized in Fibro..

Have you read any books about it?? I am not sure if you have a book by Dr. Devin Starlanyl available over there but I treat it as a bible for fibro!!

Just post any questions you might have there are plenty of us to come up with an answer or help

{{{{ huggsies }}}}}

Indy

[Tootsie]

Hi ptlover, and welcome to the fibro forum! As you may know, this site had a massive crash and was out of service for the entire summer. We all have just resumed posting, so there are not a lot of previous posts for you to review unless you go into the archives.

In some aspects, the doctors who say you have to learn to live with it are very appropriate. Since there is no one medication or treatment modality that is effective for everyone, it is up to us, individually, to find what works best for us.

For myself, medication is simply not an option. Anything I tried had side effects that were sometimes worse than the symptoms. When I finally found a balance between sleep, avoidance of stress, 3 normal meals, and exercise, the fibro symptoms are manageable. I also use something called Alexander technique. It is basically posture lessons but gives me a wonderful sense of having some control over the muscular tension that accumulates in my neck and shoulders especially. Cheerio.

[Linda25]

Welcome PTlover!

yes, it's very difficult to find sympathetic practitioners. I have had better luck with Rheumatologists and physiaitrists

there are SOME meds that help some people, but every person has a different reaction

here are some that have helped me (I also have depression and migraines)

antidepressants; lexapro and Wellbutrin SR
Zanaflex at bedtime (muscle relaxor and migraine preventative)
Parafon Forte and soma: muscle relaxors

some people can tolerate Flexeril or skelaxin - they both knock me out (muscle relaxors)

aspirn (enteric coated taken with a full meal and glass of water)

Magnesium Malate taken with Calcium and Vit. D

Daily exercise - something moderate that won't make you exhausted or feel worse - a walk is good, weight training is better if you can tolerated it.

Tylenol with Codeine #3: when the pain is really bad

Temazepam 15 mg, once in awhile if I can't sleep

Also: Chinese medicine/accupressure/accupuncture can be VERY helpful if you can find a provider who doesn't charge too much

good luck

love,
Linda25

[ptlover]

thank you all for your replies, it's nice to get some advice and see how everyone is coping. I don't take any medications anymore because the side effects are worse than the pain, painkillers with or wthout codeine don't really help, they just knock me out LOL, so at the moment I'm seeing a homeopath and started a "cleaning" program for toxins and fill up with minerals and trace elements (? the only translation I found in the dictionnary). As far as exercise is concerned, it isn't easy for me to stick to something because my husband and I move around a lot and we divide our time in two very small villages in France and there is absolutely no place for exercising, yoga or anything else. The only person I found not too far is an acupuncturer, so I will contact him soon and see what he can do to help.
Thanks for everything and hope to talk to you all again soon. Now it's dinner time here, and I'm hungry LOL

Ptlover

[uvamomb]

Welcome to you, Ptlover. It's tough when a doctor is not sympathetic or not a believer in a disease that has affected so many lives. I'm happy that you're finding a way to cope and to get some relief. Just two things to add - get you Vitamin D checked and do you have physical therapists in France who do trigger point theraphy and dry needling - it's a lifesaver!!!

God bless and keep in touch,
Kathy:)

[BrokenBladder]

Welcome Ptlover!! You have come to the right place for answers!! The people here are wonderful and always understand what you're going though. I have fibro too and so far I'm still trying to find something that works well for me. I understand when you say that you feel like it's getting worse by the day, as I'm currently going through the same thing. I would recommend that you try to move around some every day. I know some days it seems impossible but even a little bit helps.

[SuzeFMS]

Hi,
It's nice to meet you all! This is a wonderful place for information of all sorts, I'm not sure why it's taken me so long to find all of you...how long have you been a support family?

I'm so sorry to hear that you're having so much difficulty with your FMS. I was dx'd while working for a Dr.:rolleyes: a job that I loved! Ironic huh? I was very fortunate that the Dr. I worked for was willing to take me on as a patient after I retired and went on Social Security Disability. Not a ton of money in my SS Acct but better than none, since most of my 49 years I had been a stay at home mom..and a return to college mom. I do hope one day that "stay at home mom's" get the respect they're due...it's the toughest job around!! At any rate, I was fortunate enough to receive it one yr after replying...thank heavens! I also was grateful that I was married (still am) and that we have good insurance. The Dr. tried everything to help the pain. I went from being an overactive, nonstop woman, to crashing and sleeping 15 hrs a day the first year...working with pain had really worn me OUT..and the first year of retirement all I basically did was sleep...God bless my husband who did all the cooking and shopping..Stormin Norman is 12 yrs my senior and retired for a number of years...also a much better cook than I am:D Since the Dr.I worked for saw 95% of the FMS patients in our small community and was only one of several Dr.s compassionate enough to believe his patients when they said they were in pain. It seemed like all the other docs thought this "new" dx that had come to our county was a free rx for pain killers, NOT! By the time I was hit by the "FMS Bug" enough women had come through that denial on my part was being to loose it's grip. The arm pain,shoulders, neck....for sometime..all on the left side of my body...you could have drawn a line directly down the midline...it was unbelievable! It left me so drained by the end of my workday that I came home and went to bed...after soaking in a very, very warm tub...the only thing I got relief from. A little more time passed and it was now on the right half of my body:mad: it wasn't long before the Dr. could see my days were becoming unbearable...I had worked for him for quite sometime...he was not only my boss but my friend...as was his wife(what a kick). Since we don't have a rheumatologist in our COUNTY I had to go to Modesto which is over an hour away from our home. Anyone with FMS will understand why driving an hour each way to the Dr. was such a chore. Dr.K gave me the "tenderpoint test"...I passed with flying colors...:( , but grateful I at least had a "registered diagnosis" that could be documented. I was put on several things so I could try and continue working....I was still sleeping through my lunchtimes, dropping weight(poor way to lose it) ....my husband suggested I think of retiring....but having a job you look forward to each day is hard to leave...the office was like a family; I knew all the patients by name, all my codependent needs were being met...;) , I started losing my balance, often not making it around the doorway without running into the wall (I'm sure it appeared to the gang like I was drunk...I don't drink...although it might have helped..not really:rolleyes: )
I was sent for an MRI to make sure that it wasn't MS...many, many, of the same symptoms, so if there is any question it's good to check...although they are incredibly expensive. My MRI was negative for MS. I guess God figured I hadn't gotten the message in August of 1996 and I had to crawl to my bathroom...my body at 49 had finally given up...I tried a 6 week disability leave...then they offered me another leave, hoping things would improve. I knew after 3 months that someone else would have to be trained, I couldn't function in the upright position for more than a few minutes...I was also diagnosed with Chronic Fatigue and Chronic Myofascial Pain Syndrome......I'm not sure how CFS is differentiated with FMS...they seem to be one in the same for me. The fatigue started to become better after a year or so...even with the pain meds I was on, and I was on enough at the time to keep it to a "fairly manageable level"....but I wouldn't drive for a long time for fear of my reaction time not being good enough...the pain meds...other meds finally got to a place where I could drive some. By this time, my best friend, and 2 other close friends also were diagnosed with FMS. It was like a real "epidemic" had come to run over our community. We live in a slow paced town in the beautiful foothills of Central California....just outside of Yosemite. I talked to several of my friends and we decided to start the first Fibromyalgia Support Group.....We used Dr.Devin Starlanyls FMS Manual as our FMS Bible....she (that I know of) has two more than I've got...I've stuck with Devin since day 1...she was on Fibrom-L..a support group online that was a real lifesaver for me. It's still going today..but lots of changes in 10 years...I haven't been on it for several years except an occasional visit. All I can say is...get yourself another Dr. Let me, or the FMS Support Group in Southern Calif get you the names of Dr.s that DO believe in FMS. There are so many things I'd love to share...and will, but I've got to get off the computer before "I crash." Please, please....ask anything...I'm an open book...you're not going to like this, but the number one thing that helps the most is the E word..EXERCISE...start slow..many of us still have to take meds to help with pain though..but E. keeps it at a much lower dose. Sleep hygiene is incredibly important along with stress management...meditation and yoga...that's another day.....

Thankyou for having this wonderful place to meet and support one another.
Gentle Hugs,
Suze :)

[Tootsie]

Hi Suze and welcome to the fibro forum here at braintalk. I was so glad to see you so enthusiastic about exercise. It is my mantra and I sometimes feel that the more newly diagnosed think I'm out of my mind to recommend such a things when it hurts so much to move.

I am a .3 of a mile swimmer, 3 X a week and don't think I could function without my "fix." I sleep better, have more energy and believe it or not, when I get out of the pool I feel like I've had a nap. Medications do not work for me as I react badly even to caffeine in coffee. That balance, of some kind of meditation (I use Alexander Technique as the posture lessons are a big part of my problem), avoidance of stress, adequate sleep, and a reasonable well balanced diet is what works best for me also. Cheerio.