Fibromyalgia

[gkb]

Fibromyalgia pain I am able to deal with thanks to Tramadol/Ultram and lots of supplements. The fatigue and mental anguish I am not sure I can deal with. Please let me know if others struggle this much coping with normal activities. If I have any energy, I might be able to get dressed, do a few things around the house and that is it. Are the days of: grocery shopping, cooking, daily routines all in one day gone for good? I am lucky if I get 3-4 small things done in a day; and then , sometimes "pay" for it the next day with more fatigue. My mental state is a Zombie...get lost while driving, memory loss, loss of words, brain fog, etc. I take meds for depression ( for 11 years) and don't feel "depressed" but more hopeless and overwhelmed. Massage, trigger point, exercise, acupuncture chiropractic, water therapy, are all great for pain, but what helps with this horrific exhaustion and mental fog. As others, I was a "Super Woman"...my career as an Interior Designer depends on my mental and creative clarity plus lots of physical movement; I have not worked in over a year. My life is revolving around how I am going to feel or if I can get out of bed. To say the least, my family is not understanding; they want to know when this is going to end and the "real me" comes back. "Why isn't anything working you need to find another doctor".When I feel that I have accomplished great strides by doing a FEW things, it is never enough in the eyes of others; and in the real scheme of life what I have done isn't much. How do you make people understand that you are doing the best you can???? I am so tired of hearing "you have to make yourself", "don't give in", "just get out of bed and do it". Going to a Rheumatologist, Internist (of Eastern/Western medicine), and trying to get into a Neurologist (maybe there is no brain); forum members what type of doctors work best for you. My air is running on low....

[janethen]

i feel your pain, i was just diagnosed fibro a month ago, but i had suffered for 3 years from back pain due to herniated disc. it all started there when i got hurt,then the back pain everything just went down hill. i have two kids, husband and i separated because we drifted apart and his' not really helping me out anymore. what happend to for better or worst. Sometimes i just tell people i'm better so they stop feeling sorry for me or think i'm crazy. I still managed to go to work(dont have a choice) everyday and care for my kids. it's so hard, i just want to end everything but my kids keeps me alive. i'm taking cymbalta for pain, i get pain like shooting pain on my neck is that normal? and twitching all over my body. i slowed down with the pain killers because it wasnt' doing anything for me anymore. I'm sorry this is bringing you down, i know when i feel bad or feeling hopeless i get more depressed and bad thoughts in my head. you probably heard this before, try yoga, getting massages ( i would but can;t afford it) or just medetate on your bed will help clear your mind. Dont give up pls, i know you could do it. this is my first time on this site good to know i'm not alone. hang in i'll pray for us.

[DeltaLady]

You are not alone -- I totally understand what you're going through. I have not been diagnosed with fibro but checked in on this forum due to the fact that I've been home for a week from work because I'm exhausted. It all started with foot issues in July, complications -pain set in at Labor Day, surgery mid October, pain after surgery. I'm taking tramadol to control leg pain (before that oxycodone). Missed four weeks at my job as a FF&E coordinator for a new hotel development (so I work closely with designers) went back to work for a week and a half and became so tired I couldn't go to work. Having chills and hot sweats. Thought it was the flu but don't have fever or respiratory problems. Went to the doctor Monday and had blood work/found out today that it's normal. So yes, I understand that no one believes there is anything wrong with you which puts more stress on the situation. I'm very fearful that I'll lose a job I love because I can't make it through the day. My company was very supportive through the whole foot issue because they saw it develop but, of course, thought once I healed I'd be back good as new. NOT!!! Thank goodness my "significant other" has been patient and wonderful because like you just getting a shower and dressed in the morning is a big chore. I made it to the grocery store today (Whoopie!) I've been all over the internet trying to find the magic cure. It's blow's my mind that we're almost in 2009 and there's so little the medical field knows about treating this problem. Like you, I want my life back! Hanging in there with you in the hope help will come our way.

[corundogs]

DARNIT! I just had written a SUPER LONG post...and I hit a wrong button and I lost it - I HATE THAT! LOL!!

Anyway, I will tell you without question...you are NOT ALONE! I know that isn't any help, but it may make you feel a bit better to know that you aren't crazy! LOL!! And do not let ANYONE ever tell you that "it's all in your head" because what you are feeling is definitely real! There is however some new research I read about recently that is showing that there may be a part in the brain that causes this...so I guess the "it's all in your head" may fit after all? hehehe!!

Also, there is no "pushing through it" or "getting over it" or "just do it"...I know there is no way to make others understand this, but YOU MUST!!! I can give you some websites that maybe you can print out some information to give to them to read if you would like - if you think they would help. There are a few different things that have been written that really help others. Again, let me know if you would like me to give you the links.

I can tell you that I have felt EXACTLY the way you do...and did for many years. I have had Fibromyalgia for almost 12 years. I went to bed one night and woke up at 1am and my life has never been the same. I was living a very normal, active life of an almost 28 year old. It was a Thursday night in April, and my best friend and I went out to do our regular Exercise Routine, starting it up again that day after the "winter break" (which since we lived outside of San Francisco, it wasn't much of a winter, but it was our excuse I guess...HA!) She would jog the local track and I would fast walk. When we were walking home, I told her that if I was skinny and in shape (which I was neither...LOL!) I would have really worked that muscle that gives you that "cut in your butt". I went to bed that night, and when I got up to pee at 1am, I literally fell on the floor because my leg wouldn't support me. I called in sick to work that Friday and on Monday when I still couldn't walk, I went to my doctor. She gave me some muscle relaxers and an anti-inflammatory. A week later, when I was no better, she gave me something stronger. A month later when I still wasn't better, I went to a specialist and was put on even STRONGER medications - Methadone! (And no, it's not just for heroin addicts...it was actually a pain medication first!) Unfortunately, it never worked the way it does for some and was not effective for me. I was then sent to the Pain Management Clinic at Stanford Medical Center and was diagnosed with Fibromyalgia. They also put me into a 14-day inpatient Detox Program to get off the Methadone - do not take it for a long time if it doesn't help immediately! I not only suffered through those 14 days, I went through horrific withdrawl for 27 days after at home. I lost 32 pounds in those 41 days (which was the only good thing about it! HA!)

I then suffered for many years with not only the pain but the dibilitating fatigue. I would go to a restaurant and place my order, and before my drink would arrive the wave of fatigue would hit me and I would have to pay ASAP and get my order to go...and then go sleep in the back of my Jeep for 3-4 hours before driving the 2 -3 miles home! I literally couldn't even drive that short distance home because it was so overwhelming! If I drove even 40 miles from home, I KNEW I would have to sleep 4-6 hours in my car before trying to drive back home. I have slept on the side of the road more often than you could ever imagine! There were many times I didn't even make it home, having to spend the entire night in my car.

Until I discovered a medication that has CHANGED MY LIFE!

It is called Provigil - it's prescibed to those with narcolepsy, sleep apnea and people who do shift work. However, it also helps those with the fatigue we face.

I haven't had to sleep in my car since I started taking it about 5 years ago...and my life has never been the same! It is not like any other type of medication out there for these problems - there is no "speedy" feeling, or heart racing or any of that! It truly just doesn't allow the fatigue to rule your life!!

It comes in 100mg and 200mg tablets - I take the 200mg. It also has a HUGE tolerance issue...I can't take it more than about 5 days in a row before it starts becoming ineffective. I do not take it everyday...if I am just at home, doing my normal daily routine (getting up, feeding myself and my "Kids", letting them out, watching tv and on the computer and going to bed) I don't take it and will take a 3-5 hour "nap" during the day. I sleep at least 10 hours a night so I do sleep A LOT still! However, if I do anything outside of that, it is a REQUIREMENT! Even to do the dishes, laundry or anything. If I have to leave the house - even to run to the pharmacy - I must take it or risk having to sleep in my car again. Some days I take 2 pills. On the very rare occasion, I have even taken 3 - like the day I moved from Houston to Austin.

There is no generic form and won't be until 2012. It is very expensive and without insurance coverage, it will probably not be an option. I just called Walgreens and a 30 day prescription of the 200mg tablets is $367.

This is NOT an easy illness to deal with...not that any health problem is easy. But this will change your life. At least for me it did. There are those who still lead relatively "normal" lives - they still work, maintain relationships, raise their children, etc. I however was not able to do any of those things. I had to make the decision not to have children because I knew I wouldn't be able to take care of them, and thank GOD I didn't have any yet! I have also had to make the choice to remain single as I can barely take care of myself and was not able to take care of a man the way they require. My "Kids" (I have 4...one of them is actually a Service Dog) take care of me more than I take care of them I think...LOL!! Even having friends is something that I found to be difficult. It's so hard to make plans and at the last minute have to cancel because my pain levels are out of control. They understand, or at least try, but it's still difficult.

I went through all of the stages of grief - I lost my life, or at least the life I had known for almost 28 years. I went through each cycle - denial, anger, depression, bargaining and acceptance. You may have to do those things as well if you have a severe form like I do. You may not, but if you do...ALLOW YOURSELF TO GO THROUGH THESE THINGS! It's the only way you will come out the other side...and when you do, you will be able to face your new life. You will learn new ways to enjoy life again...it just won't be the same as it was before you got sick.

Do some research on Provigil. There are those stories out there where people are using this medication recreationally. Just like they do with Oxycontin (which I also take) and those people ruin things for a lot of people. But don't let those things deter you from asking your doctor to let you try it.

It could really change your life and allow you to start living again. At least try it if you can!!!

As far as what types of doctors I see...my main doctor is a Pain Management Doctor. I don't know where you live, but any larger city is going to have at least one. If you live in a town of 10,000 or less...you might have to drive to your closest city but you should be able to find one relatively easy. As long as you have a documented case, there shouldn't be any problem. Remember though, aside from doing interventional medicine (injections, etc) their main focus is pain medication. And it's a serious "business". You will have to sign a contrac stating you will ONLY get pain medication from them, and they WILL drug test you. If you go to the dentist to have a tooth pulled, you cannot get Vicoden from them...you MUST get it from your Pain Management doctor. They won't prescribe any other types of medications for other issues either...I can't even get my inhaler for my asthma from them...LOL!! There are reasons for this - for your own protection because of course, the medications they prescribe are heavy duty...but also for their own protection. The FDA follows their cases and they must follow the rules to the letter or they can lose their practice! I had one doctor who was investigated because while he wasn't a Specialist in Pain Management, when he was in the military he did specialize in it. And he dealt with a lot of patients with chronic pain and he prescribed lots of medications. But because he did, the FDA investigated him because it wasn't his "specialty".

I take not only the Provigil, but Oxycontin (120mg a day), Percocet for breakthrough pain (10/325mg 3 times a day) and Xanaflex (for muscle spasms, taken at night). Along with my Synthroid for my Thyroid and some other things (inhaler, etc)

But those 4 medications allow me to live what little life I have. It's more than I had even 5 years ago. These are all medications that have tolerance issues that build up overtime. As I mentioned, the Provigil is one that is quite fast. Oxycontin is one that I have had to increase over the past 8 years. I started with 60mg. After just a year I increased to 80mg. I stayed on that dose for almost 6 years and was getting VERY LITTLE relief but was so afraid to increase because I am still relatively young (39 until May...LOL!!) and have to have someplace to go! I increased to 120mg last year and am still getting the relief I need. I do however of course take the Percocet for "breakthrough pain" which is something that some days is worse than others. But I need it in order to do anything outside of again, my daily routine and even those days I need at least one pill.

I don't recommend starting out with Oxyconin. I took other "cocktails" for years before starting that - high doses of Vicoden and Valium and Soma (ridiculous amounts of Vicoden which the problem was the Tylenol that came with it! Somedays, I was taking well over 5,000mg of it - how a doctor allowed this is still beyond my comprehension! LOL!! But it's something that as with the Provigil, it again changed my life.

Don't let my story scare you though...you may have much more actual "life" than I do...but you may not. Either way, I hope this helps you in some way!