Fibromyalgia in your 20s

[paintedpennypony]

I was just diagnosed with fibromyalgia after lots and lots of tests with my rheumatologist. They prescribed 20mg Cymbalta to help with pain. I’m really bummed out by this. I’m so tired all the time and struggle with daily aches/pains. It zaps my motivation to do anything which sucks… I have two lovely horses and I’ve barely touched them in a month (granted we’ve been under a heat advisory, but still…). My garden is being neglected. There’s so much to do all the time on our little farmette and I can barely drag myself through feeding the animals.

COTH has given me such insightful advice with my horses so I’m hoping to get some wisdom with my own health issues.

Current meds are 20mg Cymbalta which seems to be helping and I have had neutral/good reactions to. 300mg Wellbutrin for anxiety/ADHD that I’ve been on for years. Supplements are D3/K2, melatonin, and supposed to be taking b12 but it makes me soooo nauseous I can’t stand it. I’m going to start drinking kava tea nightly as it’s helped with anxiety and body pains before.

I eat well, intermittent fast 16-20hrs daily, sleep 8hrs+ nightly, average 11k steps daily, ride 2-3x weekly when it isn’t miserable outside, and do yoga not as often as would be beneficial. Stretching helps minimize my body pain a lot. I drink probably way too much caffeine which doesn’t help with the afternoon/evening fatigue.

Any life style changes, supplements, token words of advice for dealing with this?

[3PonyFarm]

I am so sorry you are dealing with this condition. I hope you have a good medical team that will listen to you and not be dismissive about your symptoms. A friend who suffers from fibromyalgia dealt with that about 20 years ago before she was diagnosed.

@Jackie_Cochran, who has shared her MS condition might be able to give you some suggestions that worked for her. Since both are autoimmune conditions maybe there is some overlap in ways to get some relief.

From my friend, she says to get plenty of rest. That has helped her when she has fibro flares.
Good luck and please let us know how you are doing.

[RMJacobs]

I’ve had fibromyalgia for a long time, secondary to rheumatoid arthritis. I developed RA in my late 30s, and I’m 68 now. So I’ve been living with this stuff for a long time.

If the Cymbalta works for you without side effects, that is one of the things that seems to work for a lot of people. I had the joy of hallucinations when I was on it, so I couldn’t stay on. I’ve been on gabapentin a long time, and that helps, but unfortunately I can no longer metabolize it correctly, so I had to cut way down on the dosage.

I make sure I exercise every day without fail. My choice is cycling, as it gets me outside. For days when the weather just won’t allow me to go out, I have a stationary bike. I mostly manage to ride outside most of the time, even during Colorado winters.

I have a lot of other health stuff going on, but I think the fibromyalgia is the toughest to deal with as I can’t take the one med that helps the most.

I’ve always tended to push through pain, and that works for me. It’s not the usual approach.

[paintedpennypony]

Thank you for your kind words! The Cymbalta/Wellbutrin combo is preventing me from feeling the full emotional burden of this diagnosis which I am grateful. But I still feel the weight of it. It explains a lot, but it’s tough to grapple with, knowing that I will live with this for the rest of my life.

There’s so much I want to do with our property and the energy is just not there. I feel extremely guilty for not doing more with my young horses but the energy is definitely not there in 100* heat indexes. Lots of guilt for not doing more because there’s so much that I want to do and even more that needs to be done. Sigh

[paintedpennypony]

Do you find that exercise helps the pain?

[Bogey2]

My mom found swimming and walking and yoga to really help. She chose not to medicate and drastically changed her diet instead. She is a wisp of a thing and the meds did not make her feel that much better.
I hope you’re better soon, the heat and humidity don’t help!

[Obsidian_Fire]

Ask your doctor about increasing your Cymbalta. I am taking 60 mg, like you I started out low then went up. That has been a good dosage for me.

[Haven_tJumpedInALongTime]

A comment on the B12 - there are different sources of B12. A popular one is cyanocobalamin, another possibility is methylcobalamin, another is hydroxocobalamin, and yet another is adenosylcobalamin. After extensive trial and error, I have found that my body can only handle the adenosylcobalamin. I react poorly in various ways to the other three. Just a thought about trying a different type of B12 than you already have. A source I have found for B vitamins is PureGenomics B-Complex. This is the only B complex that works for my body.

[Jackie_Cochran]

Hi!

One time over 30 years ago my then neurologist diagnosed fibromyalgia. I was yelling with pain whenever my husband touched me, I hurt every time I moved and life was a misery.

My fibromyalgia went away when I finally got my neurologist to prescribe Dronabinol (aka Marinol which is synthetic THC, supposedly the “active” ingredient that gets a person high from smoking marijuana). She started at the lowest possible dose (2.5 mg.) and over a few years I ended up at 20 to 30 mg. a day.

I tend to get the bad side effects from prescription medicines, most of the time these side effects are painful, injure important organs, or make my neurological system worse.

I have been able to handle the side effects of the Marinol. Unfortunately most doctors refuse to prescribe it because it is synthetic THC, the supposed active ingredient of marijuana. When I first took it my comment to my neurologist is that the people who said that THC was the active ingredient in marijuana LIED because it does not resemble even the weak marijuana I smoked 50 years ago at all. She told me that the THC had to work with another chemical in marijuana to get high.

I am pretty sure that doctors will make you take a whole bunch of other prescription medicines that may help some for a while before they will even consider prescribing Dronabinol for anything except maybe the nausea from chemotherapy.

It is my hypothesis from my experiences and seeing other people’s experiences over decades is that people who end up “addicted” to marijuana have auto-immune diseases and that they are self prescribing the only effective treatment they have found in spite of going to doctor after doctor.

Lately I have been exploring what is called Acupressure, using acupressure gear I have ordered from the Walmart web site. This gear has worked well for the pains I got from plantar fasciitis. I have sandals, mats and pillows. This acupressure gear seems to release endorphins, probably in response to the fact that the little acupressure projections feel like running into a sharp thorn. I do not know if you could stand the fact that the acupressure stuff hurts on top of your fibromyalgia. Maybe you could try it on a part of your body that does not hurt as much from your fibromyalgia.

I had to give up on owning horses because of my MS by stopping replacing my riding horses when one died. My MS did not get really bad until I finally got my own land and got to live on my land with my horses. I really tried, but as my then undiagnosed MS got worse and worse I just could not take care of my horses properly and I really, really, really tried to on top of working full time and raising two boys.

Now I ride at a lesson barn with an extremely understanding riding teacher. My land is all overgrown now, holding the soil stable and giving the local wildlife plenty of shelter and food, plus generating a lot of oxygen that I get to breathe whenever I open my door.

[paintedpennypony]

How did she change her diet? I don’t love being prescribed another pharmaceutical and would like to manage my symptoms holistically if I can. My diet is good but there are areas that I could clean up

[paintedpennypony]

Have you had any side effects? Cymbalta scared me to start because I’ve read that quitting is extremely painful and difficult.

[paintedpennypony]

Thank you for the info! The one I took is cyanocobalamin and it made me nauseous like nothing I have ever experienced before!

[Obsidian_Fire]

All the drugs in the SSRI/SNRI class have warnings about going off of them.
I haven’t had any side effects from the Cymbalta. But, I haven’t tried to go off it either.
Like you, I started out with a low dose. But I was told to increase it after a couple weeks. I didn’t do it; I was not real happy about being on “that” kind of drug. But, after talking it over with somebody else I knew, I decided to go ahead. Bingo. Fibromyalgia symptoms abated. They have not come back.

[GreyDes]

A friend of mine went to an anti-inflammatory diet in addition to medication and says it made a major difference.

I believe she avoids grains, sugar and alcohol. I’m sure she’d share details if it’s helpful!

[Bogey2]

She eats a lot of Basmati rice, carrots, chicken and whole foods. Rarely anything processed. Eggs, and minimal fruits (apples and blueberries mostly). Gluten free breads and crackers.
She takes Horse Chestnut supplements for some reason…I forget but maybe for pain. She is a tea drinker, no coffee.

[paintedpennypony]

Yes details would be very helpful if she is willing to share. Thank you

[GreyDes]

She says it’s the anti-inflammatory paleo diet and suggested these two links for more info.

AIP (Autoimmune Protocol) Diet: A Beginner's Guide

The Strong and Healthy Diet

She also said she’s completely cut out alcohol because it was a trigger for her and almost all sugar. She dropped caffeine for a while but has been able to drink coffee again with no noticeable issues.

Hope that helps!

[Live_Wire]

What a gut punch. It gets better.

I was diagnosed with RA when I was 15 and eventually with Fibro in my late 20s after years of trying to convince my doctors I was in pain. I had all but given up until my GYN really rallied for me.

I did a trial run of the Cymbalta and physically it did help relieve some of my pain, but I have always had strong reactions to SNRI’s and SSRI’s and it was such a rollercoaster I decided I would rather live with the pain than live with the side effects.

I do not take medication for either condition. I am able to lead a pretty regular, healthy life with proper management. To be clear, I am not anti-meds! Unfortunately, it’s just not a reasonable option for ME.

What has helped me tremendously:

-I quit drinking. This might sound like a given, but I was ignorant to the fact that I was self medicating. That practice paired with the addiction gene I’ve been blessed with was a bad combo, so I quit.

-I did an elimination diet and took careful notes of how I was feeling to create a road map for how I needed to fuel my body. I don’t stick to a true anti inflammatory diet because I love a good steak and require one cup of coffee to function, but I’d say 75% of what I eat is anti inflammatory. The red meat I do eat comes from a local farm. I’m a veggie snob and won’t anything if it wasn’t fresh when I started. I try to do a fruit smoothie every morning. Lots of teas. Not enough water because I identify as a camel, but the more water I drink, the better I feel (imagine that). Note: On the days I just feel BLEH and truly exhausted, I up my water intake and can almost immediately feel the difference.

-Intentional exercise. I’m a very active person by nature and I have an affinity for collecting animals that rely on me to keep them alive, so I’m always on the go. I get about 20k steps in a day on average. That’s not the same as exercise. I make a point to spend 20 minutes or so on my elliptical. I also LOVE my bike. We are lucky to live close to a rails to trail system and I try to take advantage of that whenever I have the time.

-I have a longstanding weekly check in with a therapist to keep my stress and anxiety at bay. Seems silly, but stress is a silent killer.

[Obsidian_Fire]

Great post, Live Wire. You make a lot of good points.

I am glad to see more drs acknowledging that fibro is not just a catch-word for untreated depression masking as physical pain, aka a ‘bunk diagnosis’ for people unwilling (or unable) to treat their mental disorders.
The dr who dx’d me with fibro was the first one ever who truly listened to my symptoms, what brought them on, and then asked me a ton of very pointed and specific questions. I had no idea what the heck was wrong with me.
The next dr told me it was all in my head and I was depressed and there was nothing else wrong with me but “shrug” stay on the Cymbalta. I wanted to slap her right out of the state.

Hang in there, OP. You’ll find what works best for you & your body.

[RMJacobs]

Yes, and it’s absolutely necessary to keep my joints moving (RA related). One thing I forgot to mention is muscle relaxers. I take Flexeril when things are really bad, and it helps.