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MarMarDub

New member
Joined
Oct 31, 2016
Messages
3
Reason
DX FIBRO
Diagnosis
01/2016
Country
CA
State
ON
I just saw my GP for a follow-up, because the amitriptyline I was taking was not helping my pain or fatigue at all.

She repeatedly questioned "my mood" and I'm so damn sick of her insinuating that this is all caused by depression. When I'm having a good day/days my mood is perfectly fine. When I'm so exhausted and in so much pain that I can't leave my room, yes, my mood is terrible. I expressed concerns about taking Cymbalta, which she had suggested, but she completely dismissed them and prescribed it for me anyways. She refuses to prescribe me anything for the pain and told me I should just continue taking the massive amounts of Tylenol I'm already taking - which provides very little to no relief. She then proceeded to tell me that fibro was just something I would "have to learn to live with."

I'm just so sick and tired of being sick and tired. I'm in too much pain to work full time, too tired to go out with friends, I've pretty much lost touch with my whole social circle and I'm lucky my job lets me work my own hours but it's not even close to enough to pay the bills. There is just nothing about life that is pleasureable anymore. If this is what I'm going to have to learn to live with then honestly it doesn't seem worth it.

I really want to find a doctor who will understand that being in constant pain and so exhausted I can barely see straight is not something you just learn to live with. It's something you take steps to try and fix, you try and give someone their quality of life back.
 

TipBill

Senior member
Joined
Sep 8, 2014
Messages
224
Reason
DX FIBRO
Diagnosis
03/2014
Country
US
State
None
Sadly I'm afraid they are right. I have never seen or heard of a case of being "cured" of fibromyalgia. I really do feel sorry for you because I know what you are going through. I hate this disease. I wouldn't wish it on my worst enemy. I, like you, find no joy in life. I am sad, scared, depressed and angry most of the time. It is a hell of a way to have to live. I don't know how old you are but I am 61 and some days I can take pleasure in the fact that because of my age I might not have all that long to live. I would hate to be in my twenties or thirties and have to go through this. Anyway, best of luck to you and I hope you find some answers.
 

MarMarDub

New member
Joined
Oct 31, 2016
Messages
3
Reason
DX FIBRO
Diagnosis
01/2016
Country
CA
State
ON
I'm 31 and while I was only diagnosed in January I've been dealing with the pain and fatigue for probably 5+ years. I feel like I'm 85 years old most days. I know there's no cure but I just hate that people are so dismissive of how it affects us every single day, and that my doctor seems so unwilling to treat me. And my mom likes to repeatedly say "you're too young to be in so much pain" which is literally the least helpful thing possible to say to me. It makes me feel horrible.

My parents are angry because I'm looking to them for help financially because I just cannot work enough hours a week to make enough of a paycheck to live off of. And the days I do go to work, even a 5 hour shift leaves me so exhausted that I just come home and fall into bed and don't move until the next morning. What kind of life is that?

I asked my doctor about the shoulder pain I've had for the last 10 years (it makes horrible grinding and popping sounds as well) and without even looking at it she said "oh it's nothing" and also told me that my constant lower back pain had nothing to do with fibro (?!?!?!) She sent me for a sleep study because she was 100% convinced that my exhaustion was caused by sleep apnea. I told her that I wasn't sleeping well due to the pain but she didn't believe me. Of course, as I already knew, I do NOT have sleep apnea, but during the 3 hours I actually slept during the sleep study, I had 20 periods of wakefulness - which she still refuses to acknowledge is due to pain.

Some days I wake up with so much pain and stiffness that I literally can't walk.

I was prescribed Amitriptyline by my rheumatologist which gave me little relief, possibly due to the fact that I couldn't take more than ~30 mg due to the side effects. And then I broke out in hives all over my body last week which I have to imagine is due to the amitriptyline (it's the only medication I was taking - no changes to anything else and reaction was literally head to toe) so I told my doc, and told her that I am not allergic to anything but the only time I've ever had a reaction was due to a long-term medication - all 3 meds unrelated. She was like "maybe you're just a person who breaks out in hives sometimes" and I'm like, nooooo that's not a thing that happens to me, I don't just 'break out in hives" sometimes. I've been stung by bees and wasps, I eat everything, I have literally never had an allergic reaction to anything before except long term medications. She was like "oh well." That's it. No desire to find out what might have caused a reaction, nothing. Now that I'm on Cymbalta, I'm worried that a few months in, I will have a reaction to that and have to stop taking it cold turkey and from what I've read, it's pretty horrific to come off of.

I have endometriosis and PCOS, as well as psoriasis. I have the hormonal IUD, which has been an actual LIFE SAVER for me, I don't get a period and therefore my pelvic pain has gone from 15 days/month down to maybe 2 days. Anyways my doctor also refused to believe that there might be a connection between endo/psoriasis/fibro. She also seems to think that medical marijuana (which is legal where I live) is a "last resort" for my pain and while it's not my first choice of treatment, I don't see how it's a last resort.

Anyways, I slept well last night so while the frustration is still there, at least I don't feel like keeling over on my office floor.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Well done for just keeping going and working...i can't work but did carry on when my fibro fatigue started and used to go home in my lunch break just to crawl into bed for half an hour then drive back for the afternoon.. often a few minutes late as i was so fatigued i just wanted to sleep.

Its no joke at all living with this illness and our families say things that they think help but doesnt..it often frustrates and upsets ...they dont mean to they just dont get it!

It's the same with so many doctors they roll thier eyes think we are exaggerating or brush away our symptoms..i promise i and so many have had all same types of treatment as you at some point....you feel like screaming with frustration at their inabiity to understand.

Take Care
 

Sugarplum

New member
Joined
Oct 19, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Arizona
It has been suggested to me that fibro is worsened by stress and putting ourselves last. My behavioral therapist tells me to be kind to myself and relax. I'm certainly trying to do that but as a wife, mother and grandmother I find that hard to do. Oh well, I pray everyday for healing and I know it will happen when God is ready.

Blessings!
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
I am sorry to hear you are having to deal with so many health problems at the same time.

It sounds like your doctor is not very invested in working on this problem. Unfortunately fibro is very difficult to treat effectively and sometimes doctors seem to just give up. Is it possible to see a different doctor?

When I was diagnosed, my health care provider gave me a class about fibro and different aspects of how to manage it. It was taught by a nurse who had fibromyalgia herself. It got me off to a good start and I was able to build on what I learned there. Is there anything like that where you are at?

Unfortunately, we are at the edge of what medical science understands, and the treatments they have to offer have limited effectiveness. I've found that I just keep adding on things that "take the edge off" (exersise, diet, sleep, stress management, supplements, etc.). I'm always in pain, but I am mostly functional. The thing that works best for me is distraction. If I can get really focused on solving a problem or playing a game, I don't register the pain so much.

I don't have any experience with Cymbalta. My doctor gave me flexeril, which works pretty well for me.
 
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