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Approaching my Dr
9 Replies
fibrochica - September 29

Hello everyone! This is my first forum ever and I am so glad I have find you. I have been reading many threads before asking my own question. I was just diagnosed with FybroM. one week ago today. After 5 weeks of testing I was relieved I finally had a diagnosis and felt like I was not totally crazy anymore. I knew something was wrong, but it is not easy to figure out FibroM. I actually had to bring it to my Drs attention and he agreed with my diagnosis wholeheartedly after checking the tension points. While he readily accepts my imput and requests for testing-to determine what was going on- he seemed to think I could take a pill-amitriptoline - and just go back my normal life - that simple. Well, I know you all understand it is not "that simple" and now I am due to go back to work on Monday 10/5 and I really don't feel I can. I have a stressful job that requires sitting for 8 hrs, using a couple of computers, and successfully being productive and efficient in the goals/standards that have been set. My job is very micro-managed and I have to account for every second thatI work. I have a headset on all day and deal with the public with their telecommunication troubles. I am nervous about asking my Dr to sign me out of work any longer, but I know I am not ready to go back -and some days I wonder if I ever will be? Like most of you, if it weren't for my 9 yr old son, I would not be getting out of bed most days. I have been trying to exercise and eat healthier, but I cannot sleep. The amitriptoline does not help, so I am soooo tired all the time. I know I am just getting started with the medication game -trying to see what helps and what does not, so I am trying to be patient. So, does anyone have any suggestions on how to approach my Dr. about keeping me out of work a while longer? I am fortunate to be collecting short term disability and my job is safe so far under FMLA. Any guidance is appreciated!

 

Fantod - September 29

Hello fibrochica and welcome to the group. You were extremely lucky to be diagnosed so quickly. Many people spend months or years trying to get a firm diagnosis of fibromyalgia (FMS).

While I commend your doctor for listening to you and figuring out that you have FMS the rest of the treatment plan is sorely lacking. Amitriptyline is only one part of the puzzle when treating FMS. You need to see a rheumotologist and/or a pain specialist with an interest in FMS. You can call your local hospital physician referral service and ask them for a recommendation to a rheumotologist and/or a pain specialist (I have both) that treats FMS. Or, you can go to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly doctors in your area.

There are now three prescribed medications used to treat FMS. Only certain classes of prescribed medication work; OTC remedies do not. The primary drugs used to treat FMS are Cymbalata which treats both the pain and depression that usually occurs with FMS. Lyrica is another option. The most common complaint about Lyrica seems to be rapid weight gain. The newest medication is Savella. It has been used in Europe for years and was approved by FDS for use in the US earlier this year. There is no cure for FMS but it can be managed. It does take time and a lot of tinkering to find the right medication and doseage that will work for each individual.

Sleep is a crucial part of the treatment for FMS. FMS causes short bursts of high intensity brain waves during the deep sleep cycle. This results in nonrestorative sleep. Your muscles need deep sleep to repair themselves after the days activities. Interrupted deep sleep means higher pain levels and overall muscle soreness. This is why your doctor prescribed Amitriptyline. The latter is what is usually prescribed to treat sleep issues associated with FMS. Some people do better with different sleep medication.

Take some time to throughly read all of the information in the blue boxes on the lefthand side of this page. You are going to have to be your own best advocate when it comes to managing this syndrome. There are still a lot of doctors out there that either don't believe FMS exists or don't treat it properly. Knowledge is power.

As for telling your doctor that you are not ready to go back to work - just do it. When dealing with FMS, it is often hard for other people to understand the depth of exhaustion and pain we experience. You will have to learn to stand your ground and insist. You can cite your inability to sleep, exhaustion and lack of concentration. If all else fails you can point out that it is far too soon to expect a miraculous recovery since you have just started taking medication to help. He doesn't sound unreasonable. And, you still need to see a rheumotologist which should be done before you go back to work. I hope that my comments are helpful to you in some way. Take care and let us kknow how we can help if you have other questions or concerns.

 

fibrochica - September 30

Wow! I cannot beleive I already have answers to my questions -looks like I chose the right group :) I appreciate all the comments and will take your advice. It is so comforting to be able to ask questions/make comments and have others know what you are feeling and experiencing. I will be visiting this forum often. Thanks for the advice!

 

ptalana - September 30

Hi fibrochica(love the name), I totally agree with Fantod when it comes to just insisting that your dr not send you back to work too soon. I personally went back too soon, after a severe bout with vertigo (also a common symptom of fms)passed out while driving no one was hurt but I lost my drivers licence.
It is also extremely important that you be a strong advocate for your health. Talking to your dr and getting the referals to the specialists that you will need for your care. I'm so glad that you found this forum, I have found it invaluable. Not only is there a vast amount of info on meds, and the specialists that are necessary, but moral support and having so many others experiencing what you are is very reassuring.
Take care, Patty :)

 

toots2889 - September 30

Welcome fibrochica. I to agree with the others. Until you have some control over your sleep especially, your not ready to go back to work. If
you were to go back right now you could just make things worse. Be honest and straight forward with your dr and he should have no problem giving you more time.

 

brooksidefarm - October 1

Agreed! If your doctor cannot understand, then consider interviewing another. Remember, that although they are an expert, your doctor is hired by you and is a relationship you need to trust. God be with you.

 

tnichel - October 1

your doctor will likely increase you (amy dose) I went from 25mlg to 50mlg...it took about 3 months b/c I'm so senstive to meds that make you drowsy but it worked. You have to give meds time to build up in your systme. Then your body has to adjust to getting restorative rest again. I said it before but patience is the key even if you feel you're out of it. It's this condition. You'll likely be placed on more meds. it's tricky to figure out the right meds & right does. Ex. I take cymbalta, amy, tramadol, and 2 muscle relaxers. Sounds like a lot I know but I've had this just over 2 years and finally got the right mix. And I will drop some of the meds as I continue to improve.

As far as the work thing I'm not sure what you do but I find the longer I lay around the house the worse I feel even on the really bad days. But i also have a desk dropped with know physical exertion. Getting up and dressed goes a long way even if you can't do anything else. I hope I don't sound like I'm lecturing...I'm just speaking from my experience and what I learned after first coming to this site. Believe it or not...all the newly diagnosed come here and ask mostly the same questions. Good luck on your journey to managing fibro as best you can. P.S. Listen to Fantod. She knows what she's talking about and helped me out tremedously.

 

pfiinch - October 1

Having this illness is like taking a puzzle ansd trying to put it together when pieces are missing.I have had it for about3 years and finally the Dr.s agreed that I have Fibro.
1st it takes alot of work toregulate your med.
I take 30 to 60 cymbalta
20 mgs of ocyicotin 3 to 4 times a day/not sure how much it helps because I as my pain dr. says I am brokenin half.that is where the pain med came form
50 to 200 lyrica if mneed at least 50 to a 100 a day.
xanax to sleep 2mg a night
sounds like alot but everyday is different.Bad partof lyrica I gained 30 lbs.in 6 months.can't find a way to get it to stop except to lower lyrica.Which is very hard to do on bad days
As far as your dr.see if he can extend you fml until you get your meds down.At least a month maybe just 2 weeks.
I am sure he will uderstand that it takes time to adgust the meds.Good Luc and God bles.Get plenty of rest but not to much for your muscles will get weak and just some small walks or gardning.So your body can get use to it .Gotta Run Take care.

 

axxie - October 2

Hello fibrochica, I'm with Fantod on this one, the drug he prescribe is only a begining, you need more time to take care of yourself, before embarking on returning to work. Now there are ways to come around with your doctor, first I would make an appointment and tell your doctor, that you are not feeling well and the amount of pressure you will have at work, will contribute more problems. Give him the site, or print some of the information such as what is fibro and how it's treated and what kind of medications that are used to treat fibro.

Take your time with him and just let him know that you are grateful that he was able to diagnose you so fast, but that you do not feel you can feel you can do your job and then list the affects, such as the stress of going back and making many mistakes, that you still cannot sleep and that you are anxious. I'm sure the doctor probably just needs a gentle push for him to accommodate your needs.

If all else this does not work, tell him you require a consultation and bring a copy of your tests and diagnostic to your next appointment.

Don't feel bad if you change doctors, loads of us had to do it for the same reason. Keep a diary of your symptoms and describe the kind of feeling you are having and pain. Describing them, so that the doctor can acknowledge your illness so that he may have the chance to add to your pain management medication.

Good luck to you, and you come and lets us know how you did, we will steer you in the right direction.

 

KBRAINARD - October 10

Hello Tnichel,

I wanted to respond to your post. I wanted to let you know I was on cymbalta and tramadol together for about 16 months. I will agree with you on the pain was less to none. I started doing the mail in order for my meds ( It was alot cheeper) I got a call from the company one day telling they couldn't send me my Tramadol. I was shocked.. I love that medication its a pain blocker and it not something you can get addicted to. They told me I shouldn't be taking both Cymbalta & Tramadol together. They counter act eachother. That explained alot to me when he told me that. I would bleed like a stuck pig if I cut myself. I would bruse like crazy (I mean really bad) I made a dr appt and told him about it. After reading things in his officer he WAS wrong. I shouldn't have taken them together. So he now has me on Hydrocodone 5/500 for my bad days. I don't take them that often tho. I miss the Tramadol it really worked for me,just becareful and talk to your dr.

 

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