how do i explain F.M. to friends?

By Linda Tuesday, October 27, 2009

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I recently was diagnosed with Fibromyalgia, i have a friend who is sympothetic to my pain at work, but my anxiety level is driving her up a wall, was on cymbalta falling asleep everywhere, cant remember what i said to my co-workers or boss, and also i think i brought my friends name up in a situation that was very important to one of our clients health (we work in the medical field),, i know she cares for me, but i cant take it for her to tell me to calm down anymore...i am going thru hell right now, and just want her to be patient,,,IF I WAS THAT FRIEND RIGHT NOW, what would you say to me???? I HAVE PRETTY MUCH SAID that we are working on medication that will work, to help me out, the stresssss level at work is unbelievable. my friend feels that working with me does not go as smooth or layed back as when she works with other co-workers (on my days off),, so what would you say?? this will come in handy because it will probably take a while before i find the right medication for all. my guess is my friend is not the only person i will have to try explaining to be patient with me,,and she has been.So this will helpme and maybe other readers who are experiensing similar situations,, thank you. Linda

Comments (11) | Add comment

Nan from the Dunes

10/28/09 6:42pm

Hi and welcome

I am sorry to hear of your problems. One question, when are you taking the cymbalta?

What time of day? Are you taking it at nite?

Linda

10/29/09 2:22am

hi nan, thanks for writing,, i am no longer taking the cymbalta,, actually, i am taking 30 mgs a day in the morning until i see the doctor this friday, thirty doesnt do anything, my p.c.p asked me not to take myself off of it totaly (was suppose to work my way up to ninety mgs), i was taking it in the morning,, falling asleep on the way home from work and everywhere else, go to bed usually around eleven pm, (except for tonight, working on a resume),, so i took it in the morning,, still couldnt sleep at night, i tried every thing,, mylegs were flying all over the place too,, i never had that before.

hmmmmmmmmmmmm what was that all about any clue? thank you, linda

Nan from the Dunes

10/29/09 7:06am

Linda:

Take it at nite, max dose is 60 mg and you shouldn't fall asleep. I have no problem with it and have had it work wonders when I needed it fpr several years, infact since it came out. Although, because I feel I am taking to many meds, and have to go on medicare part D in december (I have come to the end of my employer coverage, after 4 1/2 years) I am titrating myself off of several meds and switching a couple of others. I also found savella worked wonders for the aches, but caused excessive sweating. I wish you luck. I think the most important thing when dealing with chronic pain and a new dx, is to not overreact. Provide your supervisor, and human resources with information from your doc and they really can't harm you. Do the best you can, and perhaps work a different shift (you did say medical field right?) People will be trying to look for an excuse to do whatever to you, or they might be completely understanding. Don't make your dx the excuse, just explain you need their help in working out the ability of your body as it becomes adjusted to new meds . Make adjustment yourself to help, take copius amounts of notes if necessary, to make sure you do everything your supposed to do, find different ways to learn to adjust.

Good Luck and God Bless

Karen Lee Richards, Health Guide

10/31/09 11:06pm

Hi Linda,

I can empathize with what you're going through. Years ago, shortly after I was diagnosed, I had to sit down with my boss and explain what was going on with me. Thankfully, he was understanding and patient.

Recently I wrote an open letter that FM patients can give to friends and family to explain what fibromyalgia is and what they can do to help. Please feel free to send the link or print it out and share it with whomever you need to. Here's the link: Understanding Fibromyalgia

I hope your friend and co-workers are as receptive as mine were. – Karen

Saraboo

11/ 1/09 1:59pm

Hi Linda,

I heard about Lyrica from another friend with FM, I'm not sure how drug coverage works in the US, but if you have coverage, ask your MD what he thinks. It was a life saver for her and has made a huge difference in my life dealing with neurological pain. It is a really strong drug, but once you get used to it (it took me about a week each time the dosage was raised) - it makes a huge difference over time. I'm not pain free, but in my case after spending 30+ years on getting on average 2 to 4 hours sleep a night due to pain, I now sleep soundly through the night. This has an amazing impact on pain levels and energy. Chronic pain really affects energy levels tremendously, the pain itself can affect our boundaries during conversations, and FM sufferers also have to deal with brain fog. So it can be really difficult to convey the issues you are dealing with. Lyrica will cause memory issues in large doses, your doctor should know what will work for you. Hope this helps. Saraboo

Linda

11/28/09 1:38pm

Hi ALL, I WANT TO THANK EACH OF YOU FOR YOUR SUGGESTIONS, EXPERIENCES AND PERSONAL SITUATIONS. Although it is now a month later,I finaly can write back.

I no longer have cymbalta in my system, it is amazing how some medications are life savers for some, and could cause a life for others. Everybody is different. I too was given the savella trial pack thing and the doctor sent paper work to my insurance company so i would be approved for it, I must admit when the pharmacy called and said they had great news for me (the whole pharmacy team knows me very well lol) they told me,, you have been appproved for the savella !! i almost had to change my pants,, for once I WAS PRAYING a medication wouldnt go thru,,i honestly could not take the chance of taking it. If i was off from work for six months i would have tried it, but i cannot take any chances being in the career i am in. The Rheumo doc that wrote me out the script in September, gave me 11 refills,,yes eleven refills, and to see him in six months,,i was like w.t.f.????, newly diagnosed, scared, lots of questions and suggestions,and he said see ya ,,,,,,, Is that normal for a Rheumo doc?? I would think he would want to see how i was doing in a few weeks dont you???? oh,, and the funny thing (well not so funny THEN) is that i found a "tick" in my head,, yes,, its head in mine!!!! (is that where the saying two heads are better than one came from?) i freaked all day with that bug in my scalp but i was seeing mr Rheumo that day,figured i would have him take it out,i asked him when he was squishing my head during the appt: if he could please take that tick out (mind you i am ready to puke knowinggggg it is in my head, well needless to say, we left,,, yup tick and my lil card of savella,,,HE NEVER TOOK IT OUT i was too livid to say anything, nusre came in with some paper wok for me,and then showed me the door out,,, ah whats the biggie, if i can take being in pain 24/7 whats a tick !!!!! i finaly took it out, poureddd rubbing alcohol on it ( then questioned if i took the bottle of rubbing alcohol or hydrogen peroxide as i was rinsing it out.) thank god it was the rubbing alcohol,,and i have no idea where it ended up,, got drunk and ran from me i guess. a lil laughter to a nightmare of an appointment,,so,,the question,,, would you go back to this doc? he told me F.M. is not a disabling disease, and then i read Karens letter, shaking head, karen you have been absolutely great, i thank you, you all have been great...i think i would have ended it a long time ago if it wasnt for this site and the caring people that you are. I do have a lil something to offer,,, my wife brought home something called Biofreeze, has anyone tried it? it is very soothing,,,feels great, does not last for hours, but in a flare up it feels great,,,thought i would pass that along,,,,,,, thanks again to every one of you,.. especially karen, a long road is ahead, Its not one day at a time,, its one minute at a time, never know when your gonna get thru the next,,,,,thank god for people like you

Linda

Saraboo

11/28/09 2:19pm

Hi Linda,

what an experience you've had! I've not even heard of the drug you mentioned, Lyrica helps wonderfully with FM and is not that difficult to get used to, you could start taking it on a friday night and then by monday be somewhat used to the effects, especially if you start with an evening dose, as it helps immensely in the sleep department. I can't say if the experience you've had is normal with the doc as I live in Canada and to get in to see a specialist takes 6 months or more. I've had terrible experiences with neurologists, but after 35+ years I finally was referred to the chronic pain treatment center we have hear (only a 2 year wait) and that is what has helped more than anything else. I've backed off on the high doses of Lyrica that I've been on, still taking the night dose but the day doses were really effecting my memory and speech. My doctor has replaced the early evening dose of Lyrica (I was taking a small dose just after supper and then a large dose at bedtime) with a dose of nortryptilene and that has worked out fine (except for the weight gain at the beginning arrrgh!). Hopefully this will be of some value. Lyrica is VERY expensive, but is approved for coverage here, hopefully it's the same in the States. Saraboo

Linda

1/ 1/10 11:39pm

Dear Saraboo,

I just went back into some of my postings,,and i just came across the one you wrote,,i feel horrible,, i never wrote back to thank you........

two months laterrrrrrrrrrrrrrrrrrrrrrrrr..... so,, thank you.

How are you doing? i hope you are doing well, and your pain is being managed.

nothing has changed since the last time i last wrote in, um,,, i tried Lyrica,Cymbalta, and Savella, all three for F.M. patients, and no go,,,, too many side effects,,i did read how you were taking your medication (doses) and it does make sence, i hope it is still working for you,.... I tried Gabapentin per my request,,and chalk that one up to another nightmare,,,,,,, .. so as of now,, i am still taking NOTHING for F.M. or Depression, i am glad to say i am in therapy, but havent seen her in two weeks due to the holidays,, or whatever they are for....(scrooge here, lol), so,, I see my primary doc, and i need to get on an anti-depressant, we held off to see how the Gabapentin would work, she did not want to start me on an antidepressant with me just being on the other,,so understandable,, so now i am a miserable f--.. forgive me,,, its been a horrible two days,, experienced what A REAL FLARE UP WAS..OMG,,,I WANTED TO DIE... I WELCOMED IT.. but as you can see, i pulled thru.. it was something I COULD NEVER GO THROUGH AGAIN,. oh and i wont,,,, (stubburn huh?)...its been almost three months into my diagnosis, and i am getting no-where fast... i dont want to be on these pain meds,,, but right now i dont have a choice,,,, i am reading f.m. for dummies,, (good to see karens name in there...god love her),, but when i read something of how it can be managed, the book ends up somewhere across the room..lol.. then i talk myself out of stop acting like a baby, and go get your book,,,,,,,.. so i do,, and the process repeats itself,,lol...... but I AM TRYING TO READ IT,, i just get so frustrated,,and maybe jealose too, as how so many people are livingggggggg...... anyways,,, hope you are doing well, would love to hear from you when you have a chance,, happy holidays,,,,Linda

Saraboo

1/ 2/10 1:17am

Hi Linda,

I'm sorry to hear you've been doing poorly. I know that flares are NOT fun!! I get them as well, I think it's just something that happens with chronic pain, period. It's so important to pace yourself, yet not be immobile or idle as that will increase pain levels significantly...it's a fine balance. It's also very difficult at holiday times as we as women always do too much in order to 'make' the holiday special, sometimes in our efforts (as in my efforts) we end up ruining it for everyone because we get too tired and then crash and burn! So it's learning how to celebrate differently, give yourself room to rest, to breathe, and to make mistakes. This time of year is a bad one for flares, especially leading into January. I think so many things play into this, colder weather, short days - especially if you live in Canada, the sun sets here around 4:30 pm and doesn't rise until around 8:00 am, heavier clothes - which in turn increase pain levels. Pain and cold DO NOT mix! You will find your pain levels will increase with barometric pressure changes, hormonal changes, and especially with weight gain. Diet also plays an important part, believe it or not. I've noticed a big help with limiting white sugar and white flour, trying to stay with whole grains and not consuming alot of bread, did I mention I love bread? Also limiting coffee to two cups (boohoo) a day, and drinking LOTS of water. The water alone makes a big difference, but it's something that takes time to notice. I'm feeling like a slug because I've broken all my rules this past month and now am starting to reap the not so fun reward. When will I ever learn? Give yourself permission to be angry, there is a 'grief' process with chronic pain, it's important to understand that it will change your life, right now it may seem incredibly unfair, and dark. Work with your therapist to get through all that you feel. Perspective is really important, spending alot of time alone is not the best, it's important to speak to people - not just on the computer but in person, I hope you will be able to find others where you live who are dealing with similar issues; the ability to share what you are going through with others who KNOW what it's like is truly invaluable! I've been blessed with several friends who live with pain either through FM, or trauma, or illness, or loss. Listening to and sharing with them regarding our personal experience has been incredibly helpful! There are things they wouldn't trade with me and honestly things I wouldn't trade with them, but through it all we are able to be there for one another. It will get better, I know that's hard to believe - but it REALLY WILL GET BETTER!! :) Keep with the treatment regime, don't beat yourself up if you fail - re exercises etc. just take each day as a new day, a fresh day. Some days WILL suck, but others will be fantastic! I hope this encourages you. Blessings on you, Saraboo

Linda

1/ 5/10 11:11pm

Thank you so much for your letter,, i must say,i did get real down after reading it, and i think the truth of the matter is, is that I HAVE NOT ACCEPTED THIS YET...... SOMEONE SO FREE SPIRITED, SO FULL OF ENERGY, LAUGHTER, A CLOWN, ALWAYS TRYING TO MAKE PEOPLE SMILE, SO I GUESS YOU COULD SAY, I REALLY GOT DOWN.. BUT,, the important thing is, is to do what is important for my health// I guess the truth hurt,,and i needed to hear it,, i am not sitting dwelling, but having a therapist who is great is comforting,, thank you for your kind words... and it works both ways,, i may not be the most stable when it comes down to where i am at now,, BUT,, I AM HERE FOR YOU AND ALL THE OTHER READERS AS WELL,,,, we all share a common bond..... god bless, Linda

Linda

1/ 6/10 12:14am

If it were not for the "caring people" here at health central, I dont know or would not want to picture where i might have been not too long ago. I have received so many responses and return as well, and it feels good to be able to help someone else who might be in need of advice. I am still not on anything for my F.M., due to medications that really put me at danger (i followed the orders) but i think the next thing is an anti-depressant, as i find myself sinking deeper. Eperienced my first real flare up. I never had experienced anything so bad for two straight days, and of course the rest of the days your miserable in pain,,, hmmm whats wrong with that picture?, however,i am greatful to have learned so much, and greatful to alllll my new friends here,, even the ones that dont know how to locate their messages and come down on me for not writing... I dont know what my next step is as far as medication. I am in the medication field, and need to be on top of my game and not drugged out by anything. These lovley blizzards here in new england have been an ice on the cake as well... (no pun intended) thank you all !!!! god bless you all.

will be getting my trigger shots this week, i usually receive about three or four in the lumbar area, and then about another four in the shoulder muscles up to my neck, paint my smiling face on and go to work the next day,,arghhhhhh!!!!!! thank you everyone,.. i pray you all have a great new year, and low pain days. Linda

how do i explain F.M. to friends?

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