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4 Replies
MaRiaT - July 9

Hi everyone,
This my first time here on this site, on any site actually. I don't know where to begin.....
I've had the run around with the Dr since January, given the scare between fibromyalgia and multiple sclerosis. I was just told last week that it was fibromyalgia.
I'm scared, I'm nervous, I feel lost and confused, I don't know what I should be expecting. I'm in pain all the time. The pain killers are no longer working.
I've closed myself down from my husband. Im afraid of him to start calling me a cry baby or a whinner.
All I want to do is sleep, but its hard, I work part time, which I can't even get up for. And I'm a mother of 4.
I no longer talk to my family, so I really have,no way to turn, but to here....
I understand that I'm not the only one going through this. I don't know what to do....


Pikespeak - July 9

Hi and welcome! This is the best site ever! IMHO, fibro is way better than having MS! Fibro does not have to be debilitating, but it's all up to you to be pro-active!. Read all you can on the posts here. What are you taking for it? Many of us here have learned by trial and error what works, and there are lots of methods! I have chosen (with my doctor) to use Savella (for FMS pain) and Ambien (for sleep). I also have recently weaned myself of gluten, caffeine and sugar--I'm not perfect about it, but it is a goal!

I have done a lot of reading by Dr. Jacob Teitelbaum, whose methods seem to make sense to me. I have started with some of his recommendations concerning diet and vitamin/supplements. I am convinced that I have adrenal gland and thyroid issues, even though the tests came back "normal."

Please share these stories with your husband!! Note that there is a support group for family members here too! It will help him to know that you (both) are not alone in this. You MUST ASK for his support and understanding for you to get better!

Another site with excellent information is the Colorado Fibromyalgia Center.


Fantod - July 9

MaRiaT - Welcome to the board!

Fibromyalgia (FMS) is a disorder of the central nervous system that causes widespread chronic pain. It is correctly referred to as a syndrome. There is no cure, but it can be managed with certain classes of prescribed medication. OTC pain remedies typically do not work for the type of pain associated with FMS. There are some homeopathic remedies that may also be helpful.

FMS is recognised by the National Arthitis Foundation, the Centers for Disease Control and the World Health Organization. It is not a figment of our collective imaginations. You are not crazy, neurotic or lazy.

The reason you are so sore and tired is that FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. You should have been given a prescription for a sleep medication like Amitriptyline.

Diet is very important. Deep fried foods, red wine, red grapes, and lunch meat are just a few examples of things that may ratchet up your pain level. Anything that contains nitrates is a potential problem. Also, artifical sweetners including Splenda should be avoided. Use something made from the nontoxic Stevia plant like Sun Crystals or Truvia which you can find in the baking aisle at the grocery store.

There are now three prescribed medications to treat FMS. They are Lyrica, Cymbalta and Savella. The longer a chronic pain cycle continues, the harder it becomes to manage or stop. It takes time and a lot of tinkering to find the right combination and doseage of medication for each FMS patient. Do not expect immediate relief when starting any medication for FMS. It can take two weeks or longer before you may notice a difference. And, it may not work at all necessitating yet another change in meds.

Have your Vitamin D levels been checked? People with FMS seem to have a D deficiency. Also, you may be gluten intolerant or sensitive. The most accurate way to check is using a stool sample. Bloodwork for gluten can be inaccurate and a biospy may miss the damaged vilii in your gut. Either of these issues will also cause widespread pain.

A rheumotologist is the doctor who treats FMS. You can find a fibro-friendly rheumy by going to the National Fibromyalgia Association website. They have a list of providers for each state. Or, you can go online or call your local hospital and ask for the physician referral service. They should be able to match you up with a rheumy who has an interest in FMS. Take copies of your medicals records with you to save time and money.

It is very important to keep the lines of communication open when dealing with a chronic illness. I am going to gently suggest that you also use the physician referral service to find a counselor who specializes in Cognitive Behavioral Therapy (CBT). They can help you develop some tools to manage the emotional impact of FMS. Many of us see someone for extra support.

If you don't want to share this site with your husband, use the National Arthitis Foundation site. The "search" function on their site will take you to the section on Fibromyalgia. You could send him a link to read about it.

You are going to have to learn to delegate and say "no" without feeling guilty. Break tasks down into more manageble increments, ask for help and remember that Rome was not built in a day. Most of us are type "A" personalities who up until FMS struck ruled our portion of the world. Now we have learned to some degree or another what is or is not really important in the big scheme of life. This is probably one of the hardest lessons to learn when managing chronic illness. The sooner you do, the more liberated you will feel.

And finally, I am going to suggest that you go online to Amazon and purchase a book called "Fibromyalgia for Dummies." Like all of the dummies series it contains good basic information. Read it yourself, ask your husband to read it and pass it along to family and friends. Knowledge is power.

You are not alone. This is a good site for support, information, and suggestions. If you just need to vent - have at it. We've all been in your shoes at one point or another. Keep in touch and let us know how we can help. God Bless.


snapdragon79 - July 11

hi mariaT, let me just start by telling you that you are not alone, and you have come to one of the best places! the people here are so lovely caring and best of all understanding. this forum is like a safe place where you can vioce a bad day, or ask advice and someone will always answer.I have had fibro for more then 10 years and it is indeed a real illness and can be very hard to deal with.please read the "letter to the normals" in the family members section of the forum, its wonderful and can give you a good head start on how to tell family and friends. the most important thing with this dreaded thing is to rest and not overdo daily tasks, and try and get as much help with things around the house. its really not a case of when will it go away but how to deal with it day to day. some friends and family can be difficult in there understanding of this illness and if they only give you a hard time, then aviod these people if you can we call them "toxic friends". It must be difficult to be a busy mother of 4 with fybro, I truely feel for you. just have a read though the postings and subjects on the forum to try get some ideas on copeing and also fybromyalgia itself...if theres anything you want to know please ask and we will try help as best we can, but for now just know your not alone, sending fybro hugs and take care xox


MaRiaT - July 26

Hello everyone.

i just started pysical therapy. Tomorrow will be my 3rd visit of therapy. today, i actually had a good day. a few aches and spasms, nothing to where i had to lie down for.
i am on cymbalta 30mgs, twice daily. the pain managemeny specialist is possibly thinking about increasing the dosage the next time i see him. i have tried lyric and savella. i did not like the way i was feeling with them. For the pain, im on 10mg of percaset, three times a day. I take a quarter of a .50 xananx at night, and melatonin as a sleeping pill.
Not to long ago, i had a big talk with my husband about how i felt and didnt want to dependant on anyone. He actually opened up too and explained his worries.
My two oldest have been alot more helpful with the house work and caring for the younger two kids. I havent explained to them what is going on. I tell them my back hurys, again. Im wanting to look online for suggestions on how to explain to a 12, 11,9, and 8 year old about fibromyalgia.



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