Fibromyalgia?

[leviosa]

After months of chronic fatigue, headaches, and body aches; I was diagnosed with fibromyalgia today. Triggered by a motor vehicle accident.

While I’m glad to have a diagnosis, I’m a little upset this is it.
She said there is no cure, and they can only really manage the symptoms.

Does anyone else have this? Is there anything you’ve found that works? Even if it’s not common? She suggested some muscle relaxers but said they could be addictive. So I denied the prescription. She put me on cymbalta several months ago, assuming it was fibromyalgia, but after testing for everything else, this was my official diagnosis. It has lessened the severity of my headaches, but not stopped them.

I’m so tired and really frustrated. I’m currently unemployed. I don’t know how I will work full time because I can barely make it through the week without some serious mental fog. I need something.

[isabel]

My mom has it, also triggered by a car accident.

It is well managed now with a host of medications as well as daily exercise. My mom sees a neurologist. I know lyrica is considered to be a good option.

She has had good luck with cbd oil for her sleep issues.

She was unemployed for a good while after diagnosis though and I remember her being in terrible pain for a long time. She still deals with near daily pain, but it has gotten much better.

I know that’s not a ton of help. I’m sorry about your diagnosis and I hope you are able to get some relief.

[hbtk]

I do. I was diagnosed about ten years ago. I’ll be honest that I’ve found nothing that helps the brain fog. I also have another disease with this as a side effect though, and it’s hard to manage. I write everything down, set reminders in my phone, take a lot of notes, etc. I know others have had success changing their diet, though. Many follow anti-inflammatory diets (it didn’t help my brain fog but did improve my stiffness and pain.)

The physical part goes in “flares”. I went years where I could barely get out of bed, couldn’t open my own medication bottles, clothes hurt, etc. My doctors were ready to write me out on disability. But now the flares are shorter and more manageable and I would say I have more good days than bad. I work full time and go to school full time now. I love my heating pad. Yoga helps a lot - you definitely want to stay active with low impact activities. It’s easy to just feel crummy and sorry for yourself and lay around (and there will be those days and that’s okay too), but one of the best things you can do for your body is keep it moving even when you don’t want to. Swimming is great too. I do take a muscle relaxer and an anti-inflammatory before bed. Mobic and Flexeril. You’ll have good days and bad days and that’s okay. You’ll learn to manage your energy (a good explanation is the spoon theory if you google it).

I’m sorry you have this diagnosis, but I hope that you will also get to a point where you have more good days than bad. It’s a long road, and sometimes the hardest part is not the diagnosis but getting others to understand/be empathetic. Feel free to PM with more questions.

[186momx]

My mom has it. She was diagnosed 25+ years ago when it was not heard of. What helps the most is a very strict sleep schedule, daily low impact exercise (she loved deep water aerobics as it is no impact), and forcing herself not to sit at her desk for too long without moving. I will say she has flare ups and we see them more during the winter/cooler months than we do over the summer. Things she has tried recently that seem to be helping is these acupuncture mats www.amazon.com/Nayoya-Back-Neck-Pain-Relief/dp/B0049Q0P9M/ref=sr_1_1_sspa?crid=1QFWCXH244USL&keywords=acupressure+mats&qid=1548202675&sprefix=accu%2Caps%2C203&sr=8-1-spons&psc=1
She also sees a chiropractor once a month for spinal health that seems to help make her feel better. She never had the headaches just the fatigue and aches and pains.

[softkitty]

I have it. I was diagnosed about 10 years ago. Mine is characterized by the flares ! I can go weeks, with my meds, and then a flare will hit and I’m miserable. They can last a few days, or weeks! I take Lyrica with no noticeable side effects. I also take cymbalta and Tinazidine, a muscle relaxer. Lots of days are foggy, but not always. It would would be easy to take to the bed, but I try not to do that. I use a heating pad for my back. I’m happy your doc kept working until there was a diagnosis. Many docs just blow it off as not a real disease.

[leviosa]

Thanks for all the thoughts/commiserations. I may PM some of you in the coming days as I wrap my brain around it all.

I have some good days (mostly bad right now.). With 2 kids, and single parenting, it’s been more complicated. Thankfully I am still able to complete MOST of my daily stuff, even on bad days. I have figured out patterns that work for me to get the most out of my energy bank. But obviously that doesn’t always work out. Things change.

With the diagnosis at least I can expect that a good day doesn’t mean I’m getting better. Before I’d have one or two days and I’d hope it was a sign of recovery.

I’m really thankful my doctor was so thorough. I saw many different specialists to rule out everything else first.

I hope we are able to find something that helps maintain things for me.

[NomadicMama]

I was diagnosed a few years ago. The diagnosis felt anticlimactic since there isn’t much to do, but fibromyalgia is better than other previous diagnoses.

Before my actual diagnosis, I saw a functional medicine doctor. She diagnosed me with leaky gut syndrome and helped me clean up my diet and heal my gut. It took about nine months, but once my gut was better, I did feel a bit better. My health has improved since then.

I take Plaquenil and Mobic for my fibromyalgia along with an antidepressant for major depression. I also take a supplement called Restore to support gut health, but it seems to really help my depression.

I floated once and it helped me feel better. (Floating is done in a sensory deprivation tank with a ton of epsom salt. It sounds crazy, but it’s super relaxing!) I haven’t gone back, I’m not sure why. Some float centers offer float sessions at a discount if you have a note from your doctor showing you have fibromyalgia.

It’s a frustrating path to get to a diagnosis of fibromyalgia. I haven’t worked in over a decade (family choices), but it’s passed time for me to find something, but I’m afraid. I am subbing at a local preschool, but it’s on a **very** part time and sporadic basis. It’s challenging to determine how to move forward—balancing normal life stuff with the struggles of fibromyalgia.

[peachy]

Jan 22, 2019 20:05:04 GMT -5 NomadicMama said:

it’s passed time for me to find something, but I’m afraid...It’s challenging to determine how to move forward—balancing normal life stuff with the struggles of fibromyalgia.

I really feel these struggles.

[calamity]

I have RA and probably fibro as well. I take Cymbalta and it helps with the nerve pain and depression, but it is a bitch of a drug.

As for me, I've learned to save my energy for the things that are really important and try not to let my illness fuck those things up. Also, on bad days I try and remember that tomorrow could be a good day, and I just need to get through one day at at time.

I'm sorry for your diagnosis but it sounds like you have a good doctor and you are on the right track.

[aliciabella]

Jan 23, 2019 5:29:11 GMT -5 peachy said:

Jan 22, 2019 20:05:04 GMT -5 NomadicMama said:

it’s passed time for me to find something, but I’m afraid...It’s challenging to determine how to move forward—balancing normal life stuff with the struggles of fibromyalgia.

I really feel these struggles.

Me too. It is awful and not fun. I would find a pain management doctor. Mine has been a lifesaver and I drive over an hour to see him but feel it is extremely rare to find a good caring doctor with an even better staff. I am sorry for both of you

[mountaingirl]

The fatigue is the worst. It’s hard to describe to someone how bad it can get. From working my ass off every day to not being able to move is a hard reality.
I just started on a much higher dose of Gabapentin and am struggling with the drowsiness it is bringing.

Good luck to you and I hope you are able to find something that works well for you. 💕