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21 Replies
michelle J - June 17

my name is michelle I am 41 yrs. old a mother of three 17,19 ,22 and a new grandmother . I was told by my primary care doctor that I have fms and waiting now to see the Rheumatology specialist,I do have a hypo thyiod ,high cholesterol they seem to be in control/ my problem is I am in alot of pain ,cant sleep because of arm and leg pains and tingling I have been on trazodone for years and also take benedryl to try and help me sleep it knocks me out but I'm awake within a hour and cant sleep my doctor gave me propoxyphene to help with the pain and sleep but that only lasts me two hours of relief anyone with Ideas on how to get some sleep ?

 

The Bonz - June 17

Hi Michelle. I am currently taking Ambien for sleep. I was taking Ambien CR, but I recently started going to the V.A. clinic and they dont carry the "CR" kind. Ambien CR is VERY expensive too because there is not a generic brand for it, but it works! I just changed to the regular Ambien, but so far it does the job. Hope I have been of some help. Hang in there. This site has helped me out a lot in just having "someone" to talk to who KNOWS exactly what I'm going through. God bless you.

 

Fantod - June 17

Michelle - You could go to the health food store and get some melatonin. Many fibromyalgia FMS) patients are given amitriptyline for sleep issues. I take it and then I take 1 mg of Melatonin on top of it. I can not tolerate much medication so 1 mg of melatonin usually does the trick for me. If you decide to go this route pick a day when you don't have to be anywhere the next morning. That way you can see how the melatonin affects you. You can take a higher dose if needed.

The sensations that you describe in your arms and legs are probably nerve pain. You could ask your doctor to give you gabapentin to get some relief from that. It is not an uncommon problem with FMS. I take 100 mg of gabapentin at night which is when I need it the most and I sleep off the side effects. There is no reason to wait for the rheumy to obtain a prescription for that. You will just have to be adamant that the current solutions are not working. The longer this goes on, the higher your pain levels will become. Your muscles need deep sleep to repair themselves. The longer a chronic pain cycle goes on, the harder it is to break.

And finally, you might consider also consulting with a pain specialist. If you are not satisfied with the rhuemotologist, go to the National Fibromyalgia Association website and ask them for a referral to a fibro-friendly rheumy in your area. Take care.

 

michelle J - June 17

thank you for your advice. I know that my medical insurance is'nt the best for covering expensive but it is worth shot . I have asked my doctor for that but that was when he said take two benedryl maybe the rheumy doctor will let me try this.Im hoping that this site will help me because i know i have been very emotional lately and it bothers me alot to know that it only gets worse I have always done what ever needed to be done around the house because I loved knowing that I accomplished something during the day now I'm starting to feel like I'm lucky to get anything done.thank you and bless you

 

michelle J - June 17

Fantod
you sound like you know alot about fibromyalgia.I hope they can break the pain cycle or calm my body down .I even have really bad pain when they draw blood it feels like they are pulling the vien out through the needle, have you ever heard of such pains? I have started a w.watcher plan again to lose some of the body weight hoping that will help me as well. If the rheumy I go to gives me any grief I will call the association for help I know I cant wait ANY longer for help the pain is horrible. Thank you for your advise i will talk to my doctor to see if maybe it can help me

 

Fantod - June 17

Michelle - It is really important when dealing with FMS to be grateful for anything that you can do. It doesn't matter how piddling it is - feel proud that you were able to accomplish something.

FMS robs people of their core identity. Once you get things under control a bit better your outlook will improve. You will have to learn to pace yourself as FMS is very unforgiving for type A personalitires like me who used to be very capable. Respect what your body is telling you and learn to say "no." Mean it and don't feel guilty about it later.

I guess the thing that I have learned about FMS is that it very quickly whittles down the things that are truly important in life. The rest of it really doesn't matter. Its been a hard lesson to learn but now that I "get" it, my life is so much more managebale even on bad days.

Take care and let us know how we can help.

 

Fantod - June 17

Me again - I've had FMS for three years. I had a disc fail in my back and that was the last straw. I have some other health problems and the accumulation was more than my poor nervous system could bear.

I have days when it hurts to wear clothes (allydonia). I do, however, wear clothes as I have no wish to frighten small children and old people to death... Ir is common to be very sensitive to touch hence your problem with drawing blood. I bet the blood pressure cuff sends you scrambling up the wall too.

Take some time to read through all of the information in the blue boxes on the lefthand side of this page. This is a very good site, populated with caring, helpful people. Let us know if there is anything else we can do to help. God bless.

 

michelle J - June 18

fantod
yes I guess I should be happy about being able to do somethings and to beable to still work but it is hard/ frustrating to go from no limits to all kinds of limits I have always done all of the landscaping to hiring people to do my mulching this year.I have always enjoyed doing all of the yard work by myself. I was helpless a few years ago because of a herniated disk the pain was unbeariable had 2 surgeries and had come back to being me and now I get hit with this its very depressing but I know me I will try to find the up side maybe when I get the right meds. and sleep I will feel alot better.

 

mypain - June 19

Ambien is my best friend. I didn't like Ambien CR as well...

 

Cassiel - June 20

Michelle,

Hi! I have total empathy for you. It is extremely
difficult to learn a new limited body and there is a process of grieving for what's happened. Allow yourself the time and be gentle with your
"mind chatter". Fantod is right, it robs of identity, self-worth,etc.

I've been having health issues for 3.5 yrs; Valley Fever with lung surgery, Addison's disease,
RA, FMS, CFS, depression, anxiety, blah, blah, blah!!! Finally in December after pushing myself through this to acomplish super-human feats, I collapsed and fractured and had to quit working.
It's been a hard, hard process because like Fantod and so many of us, we're use to doing EVERTHING. I'm in the care of a Psychologist
which helps me through this.

Trust what is written here and do take the advise to heart. Again, be gentle with yourself and begin
to understand your limitations. You will get to a point where you do enjoy yourself and have
quality time. It won't be as much as your probably use to but you will adjust.

Pain plays funny tricks on the mind as well as the type of exhaustion FMS brings. So when I
say "mind chatter", becareful what you are saying to yourself. Learn to encourage yourself, meditate, and as it's been said before, learn to say "no" and be ok with that. Your friends will understand.

I'm also on Ambien and don't think I could get through without it. Good sleep is crucial.

Best of luck and remember to be your own advocate for your health care.

 

opera girl - June 20

Hi Michelle,
Finding what works for you is going to be a process of trial and error. When you see your Rheumatlogist make sure you have your symptoms written down. When or what triggers them, anything that gives you relief, and like you have already stated the meds that work and don't. There are many different meds out there so don't give up. There is a book I have found to be very helpful it is called The First Year Fibromyalgia An Essential Guide for the Newly Diagnosed by Claudia Craig Marek. I have found it to be very helpful. I was diagnosed last October. It has been a journey.

Hang in there,
Opera Girl

 

michelle J - June 21

I have one more week and then I finally get into the doctors. my primary had to give me something to help me with the pain , he gave me Darvan 65 mg I find that it does help me a bit but it only last 2hrs.Im suppose to take every 4hrs.I cant take codiene , percaset ,tramadol(ultrum). I hope they have something that will last more than two hours anyone have a sugestions to what may work.Im finding that the rainy days really bother me and that physical therepy does'nt help ,my arms are really bad it huts in any motion I do .

 

Fantod - June 22

Chronic pain caused by Fibromyalgia is best treated by Cymbalta, Lyrica or Savella. Only certain classes of prescribed medication work for
Fibromyalgia (FMS). You'll probably need a couple of weeks of medication before you notice a difference in your symptoms.

Cymbalata is an antidepressant which is what I take. I am very intolerant of medication so I am on the 30 mg dose. The standard dose is 60mg. My pain level is better than without it.

Lyrica causes significant weight gain in most people that use it. It is not an antidepressant and is specifically formulated for Fibromyalgia.
I know two people who have used it and both of them put on weight immediately. There are commercials on TV for this durg all of the time.

Savella is new to the market so there isn't a lot of user info on it yet. I have a sample pack to try from my doctor. As soon as my current Cymbalata script runs out, I'm going to give it a go. Nothing ventured, nothing gained...

And, based on a previous post, you need something for nerve pain too.

Shifts in the weather bother most people with Fibromyalgia. I can usually tell if a new front is coming through a couple of days before it actually arrives. Right now, my area of the country has a weather and temp change every day. I'm a wreck and all I want to do is sleep.

Hang in there. Let us know how we can help.

 

michelle J - June 23

I went to the doctors today. Not Good the office was dirty and it was hard to take her as a serious DR.she looked at all of my meds in a bag (because she told me she needed to see the bottles so me writing them down wasnt good enough) strange? I told her my symtoms she pressed around and twisted up my knees there was pain but not severe.I told her that my pain is severe at night when I try to sleep,when I first get up I dont want to get out of the bed .I have pain all day but around supper that is when it starts getting very uncomfortable.I have been getting pain to the point where I sweat and get the shakes.i also told her how bad it hurts to grip things,lift things she gave me a strange look about how it hurts to draw blood she blames my bladder for me waking up instead of the pain I told thats not the case. she said she would up the Lyrica so now I am on 200mg instead of 150mg she said I need more Lyrica and she doesnt like or believe that I need anything for the pain she also suggested I not take the ones I have.I feel she doesnt believe me and wont be of much help,my next step is to see if the National Fibromalgia Assoc.and I hope that they will help me .

 

michelle J - June 23

I tried to go to the national fibromyalgia Accoc. but could'nt find the doctor listings . I am hoping to get in as soon as possible . Im very upset with the out come of my doctor visit .I went in hoping she would help but it seemed like she wants me to just take more Lyrica.She made me feel like my pain is not real and it is. I feel I need more and Im saving the little bit of pain pills for at night. I live in mass, does anyone know a good doctor?

 

serafin - June 23

Don't laugh at me or think I'm crazy but when I can't sleep and I'm in alot of pain because I'm stressing I smoke some weed; marijuana.I know it's illegal but it works!

 

Fantod - June 23

Michelle - If you want to use the health care provider directory at the National Fibromyalgia Association website, you must be a registered user. The doctors are listed under "health care provider directory." The link is on the home page but you must register first. I'd do it for you but I can only look at doctors in my state.

Secondly, if you are in MA than why not call Mass General and ask the hospital physician referral service for a referral in your area to a fibro-friendly rheumotologist?

And finally, I am so sorry to hear about your experience today. That is not uncommon with medical professionals and FMS. If you felt that the office was dirty etc, you really should report the doctor to your health care insurer.

I hope you can get some better support for your situation soon. You will have to be your own best advocate to make it happen. We are all rooting for you and wish you better days ahead.

 

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