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Dealing with FM and the hell that is my life
12 Replies
gohan2801 - September 1

I was just recently diagnosed with fibromyalgia 6 months ago, i first started displaying symptoms 4 years ago. After My primary doctor sent me to everyone he could think of (Ortho surgeon X2, PTX2, 5 different sets of xrays, 3 seperate MRI's, 2 cat scans, and about 10 sets of blood work. They all could find nothing wrong with me, he then decided to manage my pain with narcotics (Vicodin, soma, Fentynal) It seems like i have pain all over, starting with my burning, swollen, and throbbing feet cant walk or stand long, feels like pressure in my legs, constant burning, throbbing, stabing pain in my lower lumbar area of my back, and the same in the middle, burning shoulders, my muscles in my back seem to have such bad spasms they feel like they jump out of my back , my stiff neck, pressure headaches, and my osteoarthritis in my arms and hands. Because of my FM i have lost almost all bladder control and have to wear diapers to keep that under control, my bowel is all out of wack, i have a hard time sleeping even with all the meds im on as it seems my body adapts as soon as my dose is upped.

I know a lot of people here suffers from FM, but from what i was reading here it just seems like i got it the worst, i think its just due to it going undiagnosed for so long. Just 6 months ago my Ruemotologist put me on cymbalta (That dont work)

Any suggestions on roads to take to help my pain or quality of life? I would love to hear what you think as i now feel like i can openly talk about my problems without being judged as we all have the same problem, that is a huge weight of my shoulders, because i dont even talk about this to my friends.

Sorry for the long post but my story is a bit long and this is the first time i have had to vent about this.

Please leave me your thoughts and suggestions.
THanks and take care

 

Fantod - September 2

Hello gohan and welcome to the group! I read your post carefully and I would like to comment on your situation.

First of all, I am going to give you the Readers Digest version of Fibromyalgia (FMS). This is a syndrome that is recognised by the National Arthitis Foundation and the Center for Disease Control. FMS is a disorder of the central nervous system. The mechanism that causes it is not understood. There is no cure but it can be managed.

Your story is a typical scenario where the primary care doctor has no idea what is going on with their patient. Incidentally, there are still plenty of doctors out there who either don't believe FMS exists or are too lazy or overworked to treat it properly. You are going to have to be your own best advocate and learn to speak up when dealing with this syndrome. Most of us have been through a parade of doctors to find one who actually listens and knows something about treating FMS.

I'm going to be thinking out loud here so I don't want you to take offense at my comments about your doctor. It seems to me that putting someone on Fentynal which is used for cancer patient pain and the other drugs you listed is rather irresponsible. I'm sure you were both desparate to get some relief. Pain management is best left to a pain specialist who can more accurately decide what might work, and the doseage rather than throwing the kitchen sink at the patient. It sounds like you have nerve pain based on your description of stabbing and burning pain. You should probably be on something like Gabapentin for that.

Some of your pain issues are probably associated with a lack of restorative sleep. FMS causes a disruption in the deep sleep cycle with intense bursts of brain activity. You need deep sleep so your muscles will repair themselves from the days activities. That becomes a vicious circle. Amitriptyline is usually prescribed for sleep issues.

My suggestion to you is to call your local hospital and ask them for a referral to another rheumotologist with an interest in FMS and/or a pain specialist. You can also go to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly healthcare providers in your area. You need to see someone else and take a more proactive approach to your care. The better educated you are, the more in control you will feel. Take some time to throughly read all of the information in the blue boxes on the lefthand side of this page. Knowledge is power.

There are a couple of other medication options for FMS - Lyrica and Savella. Some people have good results with Lyrica. The most common complaint is rapid weight gain. Savella is new to the US market this year. It has been used in Europe for decades. I am not aware of any major side effects associated with this drug. Most rheumotologists seem to have 2 week trial packs of this drug available so you can try it without incurring any expense.

The knots you describe in your upper back are usually referred to as trigger points. Those can be injected to get them to relax, break the pain cycle and alleviate some of your discomfort. You can also ask for the Flector Pain patch. This is a patch that contains medication that does NOT enter your bloodstream. Wherever it is applied is where it works. It is worn 12 hours on and 12 off. I have degenerative disc disease too and find that this patch is very effective. In my estimation, these ate head and shoulders above lidocaine patches in terms of pain relief.

Lets talk about diet which is a very important part of managing FMS. You should stay away from deep fried foods, lunch meat (nitrates) and anything diet (pop, gum etc). All of these items will probably increase your pain level. If you must use a sweetner in your coffee, buy Truvia which is made from the stevia plant. You can find it in the grocery store right alongside the other artifical sweetners. A lot of holistic physcians feel that FMS originates in the gut hence the common complaint of IBS (irritable bowel syndrome). You should consider being tested for gluten sensitivity to see if that is part of the problem. It can be done with a blood test but the most accurate reading would be obtained using a stool test. You could also just take yourself off of anything with gluten to see if it helps your symptoms. You'd have to allow a few weeks to let your gut settle.

Most newly diagnosed FMS patients go through hell to get the right combination of drugs and doseage to give them some relief. You are not alone in your struggle to get this fixed. I think some very basic things like proper sleep, tigger point injections and getting rid of the nerve pain whould be a huge help. The best thing you can do for yourself is get all of your records and get another opinion. A fresh set of eyes can't hurt.

I hope that comments are helpful to you in some way. Take care and God Bless.

 

toots2889 - September 2

Hello and welcome. I agree with Fantod. The only other thing i would add is to go see a physical therapist. I know what your probably thinking, and i did to for many years. If you find the right one who knows how to deal with fibro patients and does myofascial release i would highly recommend it. Your muscles are tight from what your describing and probably knotted up. Thus prevents you from being active and making things worse. With fibro the worse thing you can do is sit around or not keep yourself moving.

 

pfiinch - September 2

I have had Fibro for about 3 yrs.I have finally found what works for me.
200mg. Lyrica= 100 in a.m and100 in after noon .
60 mg cymbalta in the a.m.
oxcycotin 20 mg 4xs day
2 mg xana at bed time sleep great only up about3x and maybe only once to go to the bathroom. compared to 6 to8 times night.
sometimes 500 mg of muscle relaxer
chiropratic 1 x week
1 massage a week
If I forget to tke my cymbalta boy do I pay hell
did forget 5days and it too 4 days to get releif after I started my cymbalta it took imediate action 30 minutes..I was kinda exspermenting going off cymbalta won't do again.My hands were on totally on fire I had to ice them to get the fire to settle but called my spouse when I realaized I needed the cymbalta. Half hour later 60mg s my hands and feet were not burning and I was super talkative for about 1 andhalf hour.He noticed it and was nice enough to tell me so my co-workers would not make fun of me. TRUST ME THEY HAVE FUN CALLING ME CRAZY SO WHAT SoI took 1mg xana and was feeling wounderful and normal.Now I am back on track ,yet it does not take away totally the stabing in my back right under should blade that ends up going around my ribs that make it difficult to breath and burns as well.
Trust me it took at least 1yr to find out what I had to take and when.Dr.s are just as puzzled as we are so try and not be to hard on them.
Watch what you eat and drink lot of waterand eat lots of vegetables and fruits and sleepytime tea at night it is very soothing.
I have a head ,neck,and lumber all whacked out from an accident and now 7 yrs.Later BAM FIBRO IS IN CONTROL OF MY LIFE.Now watch funny and entertaining shows keep laughing.Excerzise by walking if only 5 minutes every 2-4 hrs.What ever you can.5 minutes of yoga helps me nothing extreme.Just as toots2889 said.It really is important to not allow Fibro to take your life away.
Don't forget to pray for healing and put God into your life.As a devoted Christian I can tell you has guided more than Dr.s and I really beleive(know) he blessed me with the right job for insurance and to be able to sit or stand and move around as much I need and when.Hang in there girl the good Lord has not forgot you he is just waiting for you to talk to him and ask even though he knows what you need.It is called FAITH,TRUST LOVE AND TALKING TO HIM AS MUCH AS YOU WANT. GOD BLESS AND ALL WILL WORK.
REALLY CHECK OUT MY MEDS BECAUSE THEY WORK FOR ME AND HOPEFULLY FOR YOU TO .I am surprised with how many Dr.s haven't perscribe anti depression med.It usually walks hand and hand with this much pain.One warning you could can as muchas 30 lbs.but to me it has been worth.At frist I was upset and couldn't figure out why but now that I am feel so much more like my old self I am dealing with it and hoping no more weight because I can't afford much more lbs on me.GOD BLESS YOU AND YOURS MAY THEYHELP AND UNDERSTAND YOUR PAIN.

 

gohan2801 - September 2

Wow that is good to know that a lot more then my doctors seems to know lol, although my reumatologist seems to know what he is talking about but is not prescribing the right meds he gave me maloxicam that dont work at all. My other doctor is a little desperate but so am i at this point because he cant seem to regulate my pain to a tolerable level. The fentanyl works to a point but every month i have to up it, so i would be open to try something that would work better.

To fantod,
Thank you for your response. at this point i dont drink soda only coffee (Stright up black) in the morning, other then that water only and OJ.

I have been on cymbalta since my diagnosis 30mg and 60 mg, come to think of it i stopped taking it a few days ago and this is kinds when all this started, im going to go take it when i get home. Although even with it it only makes a very small difference.

Pfinch:
I will suggest this combination of meds to my doctor when i see him this week. Although i have always been against taking Oxy due to my heavy dislike for heavy narcotics, But due to the fact im already on fentanyl i dont think it will make much difference. The funny thing is that before i got sick i never liked drugs, the only thing i used to do was smoke pot. I was never into the hardcore drugs and oxy and fentinyl are as hard as you can get. Although i am tired of living in this much pain so its a catch 22, give up my morals and live a better life without so much pain or keep them and be in hell. I have not had any burning in my hands but because i also have osteo arthritis as well as FM my joints in my hands hurts a lot, the cartilage in my left wrist is gone and the right one is right behind it. My right hand is also not so far behind, its swollen to about the size of a golfball.

You all have been wonderful thank you, you have givin me more info in one day then my doctors have in 4 years, i will be telling my doctor all i have learned today.

This morning when i woke up i found a penny sized area on my left side right above my waist sensitive and painful to the touch. I have no idea what it is, any ideas?

 

gohan2801 - September 3

OK so i had a good night last night, i went home and took 100mg of cymbalta and it was the first time in a week that i slept through the night. Still having breakthrough back pain but thats normal, feet are still swollen and my arthritis is still going haywire. I felt like the cymbalta wasnt working but maybe that was due to the 30mg dose i was on so when i took 100mg it did the job. This will be something i will be talking to my doctor about this.

I still have that penny sized sore tender spot right above my waist that i have no idea what it is, anyone have any ideas. Its very tender and painful to the touch, it almost feels like there is something in there pushing on my bone cause it hurts my bone when i push on it.

It feels like my body is just shutting down slowly
im a 29 yr old guy i should be going out to the beach, i used to be very active before i got sick and i miss that life.

Well i hope everyone is having a good day like i am, its good to know that with help from friends like you guys there is hope for pain free days even if it is just today i treasure each pain free day i have as if it were my last.

Thank you all, and take care.

 

pfiinch - September 5

Have you tried Lyrica.With my diagnoise(spelling) I have found that this really helps alot.you do need the cymbalta withit.I am so gladd I have my 2 meds and my pain meds,I also take xanax at night to sleep beacause the cymbalta and pain meds seem to awaken me and give me energy and the xana puts me into a decent nights rest.Talk to your Dr. about the lyrica.now I tried the generic (Lyrica) andit made me act as I was drunk,so I was above my my insurance to co-pay on the Lyrica. All you can do is ask.Hope you feel better and that the information help.

God Bless
Patti F

 

gohan2801 - September 5

Yes that helps alot, i just got my cymbalta refilled so im having a much better day today, still in some pain and my feet are still very swollen but its manageable. when i see my doctor again i will ask about lyrica and xanax and just maybe ill be on my way to a few more good days. Thanks for the info and your support. Everyone that responded thank you it means a lot to me as the new guy here and to have so much support from my fybro brothers and sisters. Take care and stay safe

 

pfiinch - September 6

gohan Now be very carefull about your meds.Hopefully you are only taken 100mbg cymbalta a day.The more you take of any med the more you will have to up it.So if I feel I have to up It I try and lower the dose next day.The fact that you can go into withdrawl from any med and withdrawls are like living in hell.Now as far as the oxy and fentayl very dangeous and the withdrawl are pure hell pysco.and phys.
I really don't feel as the pain meds do the job of FM it just does on the other pains.BEEEEEEEEEEEEEE very careful for I have been there.and do not tell people of pain meds for they will kill you for it or beg you for it.I think it helps some but mostly for my back head and neck.Meds are made for different things that is why there are so many different types.I check the web before I fill my script for side effects and long term use.
Now get up go to the beach and enjoy.Gods Speed and may he bless you with more better days.Trust and faith in the Lord he is your #1 way to health.

God Bless all of you.

 

gohan2801 - September 7

I took 100mg that day and the next i lowered it to 60mg, it made me feel alot better and i have been feeling better ever since. I am starting to take oxy yet but i am going to recommend it to my doctor the next time i see him. As far as the fentynal i have already experienced withdrawal symptoms because my doctor could not get my in to see him in time, and that was rough i never want too feel that again.I am very careful with the meds i take making sure i dont od or take too much. The funny thing is before i started have chronic pain i never took any kind of drug now im on some of the strongest drugs there is and my body is completely addicted and i dont even want to be taking it but have to for the pain. Its kinda a catch 22. Im hoping i dont have to keep taking this for the rest of my life but right now my hope in that is not to great, and even if my pain goes away for good i have some very bad withdrawal coming my way, and thats not something im looking forward to.
I hope everyone is Having a great day today!!!

 

gohan2801 - September 7

Well last night was my only day off this week and lets just say that i have had a lot of pain yesterday, i managed to curb some of that off with my meds, sleeping was hard woke up at least 3 times and each time took me a while to fall back asleep. Then i woke up this morning with pressure pain in my lower back, it was very sensitive and after a few hours the pain started ascending up to the middle of my back. Now it feels like there is a lot of pressure on the lower and middle parts of my back and its throbbing and stabbing pain. Today is not one of my good days by far, it kinda seems like despite the meds im on the pain keeps getting worse.


I hope everyone's day is going better then mine. Take care and take care.

 

toots2889 - September 10

Hi gohan. Just remember that with good days, theres gonna be bad days to. On our good days we tend to over due it, or the weather can play a role, anything can cause what i call a flare up. Just keep on smiling and going with the flow.

 

gohan2801 - September 10

Thanks for the comment toots, i have had good days but not one recently over the past year or so i have pain everyday and very bad fatigue lately its been a bad day everyday i cant seem to get a good day. Its gotten to the point that i need help doing the simple day to day things i can no longer do. I know my diet plays a major part in this but i cant even go shopping or cook so i eat the frozen foods or just fast food. I hope when my brother comes to help me out i can get healthier food and some time off from day to day tasks maybe then i can start having some good days.
I hope things for all of you are better then they are for me. Take care and thank you all for all of your posts they mean so much to me. This forum seems to be the only comfort i have in my life.

 

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