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Fibro Just diagnosed with fibromyalgia

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KerriJ

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I just got diagnosed officially with Fibromyalgia.

The symptoms have been horrible the last 6 months. I've deal with them in differing severity since I was around 11-12. Apparently Fibro can onset around 10 -20 years old.

Here's the thing. The rheumatoid specialist I saw is wanting to put me on gabapentin for the pain. However, it intereacts with almost all of my psychiatric medications so we have discuss that with my psychatrist before anything changes.

Basically, I'm wanting advice on how to deal with the pain. How to start sleeping better since that's a big thing in fibro apparently. Also, if anyone else has chronic pain issues, what exercises have you found that work that don't cause too much discomfort?
 
welcome to the club!! One odd thing that worked wonders was going to a sleep specialist. Not a sleep clinic where they wire you up and read brian waves. This is a mental health person who teaches people how to retrain their brains to understand how to sleep. It took about 6 months and was amazingly helpful. Now when the pain or insomnia kicks in I don't get as wound up..so I don't tense up...so I don't end up in as much pain. Another go to is Epsom salt baths. Dump a couple cups in the tub and soak for 20 mins or so. Yoga helps too..but think baby steps..not that killer stand on your head stuff. none of this is a cure....but it just makes it way easier to deal with
 
  • Moving my lymph daily by walking, using my mini-trampoline, and hula hooping helps a great deal.
  • Learning what the heck the lymph system is, along with many other bodily things I was totally oblivious to previously in my giving most of my wellness power over to the professional folks who didn't really know me beyond a chart, like my fascia and all the other intricate systems that make up this being known as me.
  • The epsom salt baths are one of my go to relief methods often. I also use a little magnesium gel, along with coconut oil and my favorite essential oils, as an all over daily moisturizer.
  • Stretching each morning before I get out of bed, or returning to the bed to stretch right after I run to the loo (lol) helps a lot..
  • Qi gong movements for beginners helps a great deal, too. There's many you tube videos demonstrating the moves. It doesn't require you to have to get down and back up off the floor or need a lot of modifications, as it's simply standing and doing a few poses.
  • Drastically changing my diet to eliminate meat, dairy, eggs, gluten, caffeine, and alcohol made huge differences in many areas of discomfort that I'd been told to just get used to as it comes with age. It took an ER visit with the threat of possibly needing to remove an organ I'd rather keep to motivate me into trying that...and I'll forever be grateful as it's been the biggest life enriching move I've made thus far. I no longer have to take any prescription or over the counter meds to manage things. I do take a supplement that has B12, D3, and DHA/EPA benefits, all in one...and I make my own flower essences and a few other tinctures from the "weeds" that grow abundantly in my area, with the guidance of a couple local master herbalists.
 
I have fibromyalgia. My dr. said I'm the worst case she's ever seen. Yay! :eek:

She said the most important thing to do is get the sleep disorder fixed. Fibromyalgia disrupts your stage 3 deep sleep, and this makes many of the symptoms worse. When they put healthy people in a sleep lab and slightly jar them out of stage 3 sleep, they develop many fibromyalgia symptoms. As soon as they get some good sleep, those lucky people are fine again.

A low dose of some types of antidepressants helps counteract the sleep disorder. A low dose of a SSRI worked for me. It did cause improvement, but whenever I get a flare up I go back to not sleeping. Fibromyalgia and PTSD is a bad combination for me. Flashbacks cause stress and lack of sleep. Then the fibromyalgia is a mess for a while. I just have be nice to myself and ride it out. Then the SSRI starts to help again.

I recently had a discussion with my dr. about gabapentin and she strongly recommended AGAINST it. It does help some people, but they often build up a resistance and keep having to raise the dose. Then the side effects sometimes become worse than the fibro.

Getting off gabapentin is hideous for some people, too. My mom was put on it for neuropathy. She was a walking zombie, had trouble remembering words when talking and writing, couldn't read because of blurred vision, and more. She was miserably sick for months getting off it as well.

That said, many people love it. It was great for my mom's pain. Not everybody have the problems she had but I'd never touch it personally. My advice is to research and make the decision that will work best for you.

My fibromyalgia does make life harder sometimes, but I've found ways to manage it better. Lots of stretching, lots of fluids, extra vit. D (that REALLY helps the pain) an extra soft mattress, relaxing exercises, and most of all being kind to myself and resting when I need to.

Good luck finding your own path through this. Sorry for writing a book!
 
welcome to the club!! ..... .... Another go to is Epsom salt baths. Dump a couple cups in the tub and soak for 20 mins or so. Yoga helps too..but think baby steps..not that killer stand on your head stuff. none of this is a cure....but it just makes it way easier to deal with
Epsom salt has been a miracle worker for me the last few years while I haven't had a diagnosis! :) Which kind do you find helps the most? I've been using Eucalyptus right now.

Other than exercises... an RA diet that incorporates in foods with anti-inflammatory properties (Rheumatoid Arthritis cooking techniques and foods have helped me a lot).
Thankfully, one of the few perks of also having Polycystic Ovarian Syndrome is that I already incoporate anti-inflammatory foods! I'd love some more recipes ideas for those days where I can hardly move though.

Stretching each morning before I get out of bed, or returning to the bed to stretch right after I run to the loo (lol) helps a lot......Drastically changing my diet to eliminate meat, dairy, eggs, gluten, caffeine, and alcohol made huge differences in many areas of discomfort that I'd been told to just get used to as it comes with age....and I make my own flower essences and a few other tinctures from the "weeds" that grow abundantly in my area, with the guidance of a couple local master herbalists.
What stretches do you do in the morning? I always so stiff in the morning ugh. Also, I already elimate dairy and limit gluten. Alcohol is like once a month for me. What benefits do you see taking eggs, meat and caffeine?? I've never heard of flower essences?

I recently had a discussion with my dr. about gabapentin and she strongly recommended AGAINST it. It does help some people, but they often build up a resistance and keep having to raise the dose. Then the side effects sometimes become worse than the fibro.
Getting off gabapentin is hideous for some people, too. My mom was put on it for neuropathy. She was a walking zombie, had trouble remembering words when talking and writing, couldn't read because of blurred vision, and more. She was miserably sick for months getting off it as well.That said, many people love it. It was great for my mom's pain. Not everybody have the problems she had but I'd never touch it personally. My advice is to research and make the decision that will work best for you.
My fibromyalgia does make life harder sometimes, but I've found ways to manage it better. Lots of stretching, lots of fluids, extra vit. D (that REALLY helps the pain) an extra soft mattress, relaxing exercises, and most of all being kind to myself and resting when I need to.
Good luck finding your own path through this. Sorry for writing a book!

Thank you so much for the information on the gabapentin. My insurance means I have to try that first before trying anything else. I am already on an SSRI for depression (yay comorbidity) and take anxiety meds for my PTSD and anxiety. They are making me go off the mood stabilizer before starting the gabapentin. If the gabapentin doesn't work/makes it worse/has too many side effects, we get to move up and try things like Cymbalta and eventually Lyrica if needed.

I had blood draw for all the vitamins on Thursday. They ran a crap ton of tests. I am also getting thyroid and B12 checked. The rheumatologist wanted to double check for deficiencys or any other potentional issues. I am still waiting on the results.



Thank you all so much! <3
 
Epsom salt has been a miracle worker for me the last few years while I haven't had a diagnosis! :) Which kind do you find helps the most? I've been using Eucalyptus right now.

f the gabapentin doesn't work/makes it worse/has too many side effects, we get to move up and try things like Cymbalta and eventually Lyrica if needed.

I go for whatever is on sale ;) that way I can use a huge amount at once and not worry about cost. Plus, I'm really sensitive to scents and deathly allergic to lavender (yea - the great relaxation smell makes me break out in hives). I like yoga and walking for a work out. If you have comcast cable they have a great 20 minute one called Breath and Stretch that is gentle enough to do but not intensive enough to hurt. Amazon also has a couple good ones. I'm not much of a team player so I prefer stuff I can do in my living room. I've also downloaded 20 minute guided meditations that I listen to before I go to sleep. I also work with a naturopathic doctor. I never thought I would do the weeds and twigs thing - but she has given me some amazingly helpful concoctions. :giggle:

And...my doc sent me to a fibro class when I was first diagnosed. It was an 8 hour class that covered what others have found to be helpful, compared meds and showed some physical therapy exercises that you can do in bed in the morning. Almost all the professionals who came in were completely against Cymbalta and Lyrica - they said they can actually increase symptoms. I haven't tried either, soooo....

Whew. Yea its a constant battle but I do a lot of it automatically now, which is helpful on days like today. Ironically, I'm in the middle of a huge flare right now because I've been doing a lot of intensive ptsd therapy and that means pain and epsom salts and goofballs - but I don't get as angry and upset about it like I used to so I'm not making it worse. (LOL the meds do make me a bit chatty though! :giggle:)

I recently had a discussion with my dr. about gabapentin and she strongly recommended AGAINST it.

@+littlebird - thanks for the input on gabapentin! My mom just went on it and says its working fabulously. I'm meeting with my doc this month about different options and that was one we were going to try. I have a tendency to have the "very unusual" reactions to meds - so its good to know about this one ahead of time
 
What stretches do you do in the morning? I always so stiff in the morning ugh. Also, I already elimate dairy and limit gluten. Alcohol is like once a month for me. What benefits do you see taking eggs, meat and caffeine?? I've never heard of flower essences?

I lay on my back, draw my knees up with my feet still flat on the bed, put a pillow on both sides of me, at knee position, keep my back flat on the mattress and stretch both legs together side to side, holding it as long as I comfortably can on each side for at least 3-5 reps each.

I lay flat on my back, draw one knee up, cross the other leg over it (as if you're seated), and push down as far as I comfortably can and hold it for at least 3-5 deep diaphragmatic breaths, then repeat on the other side three times each.

Still flat on my back, I do the lotus pose and hold it for at least 3-5 deep diaphragmatic breaths.

I stretch my arms up over my head and hold them for 3-5 breaths for at least 3 reps.

I scoot my butt around to the head of the bed and do the legs up the wall yoga pose on occasion, but not everyday.

I chose to eliminate the caffeine after learning how badly it was harshing my adrenal glands' groove and after learning of the other nasties that are put into many of the beverages I used to love like soda (especially diet sodas and ginger ale), gatorade, energy drinks, flavored teas and waters, etc. I thought I was steadily hydrating myself by choosing so many different drinks throughout the day, but I was depleting my body of a lot of stuff in the process. I got rid of artificial colors, flavors, sweeteners, food-like substances etc. as much as humanly possible. Coffee was the hardest to let go, but I found roasted dandelion root tea and it comes a close second in flavor. Kombucha helped me get off the sodas and beer after I discovered it at a music festival, on tap. It's a fermented tea. I don't drink it any longer, either.

I chose to let the meat, dairy, and eggs go the day after my gall bladder attack two years ago because of already having switched about two-ish years prior to that where I was only eating locally raised, grass fed, free range, "humanely" slaughtered meat, dairy, and eggs, and of course eating a lot less of it all due to those options costing much more than the typical store bought options....however, I continued to weigh in around 300 lbs, still had more pain than I could handle many days (although giving up gluten did help a great deal with some of the pains), still had insomnia like a mofo, was still anxiety-ridden, brain felt like it was stuck in a dense fog (giving up gluten helped a little with that, too - gluten was my gateway gut/mood connection discovery), dealing with awful bowel and digestive issues, especially with any stress taking place, and had been diagnosed with so many different things, while none of what I was being given as a remedy was helping.

I also read a book about mucus forming foods (Mucusless Diet Healing System - Revised and Annotated version) and many other things discussing the debris left behind in our bodies when eating certain foods and how important it is to healthily eliminate what we ingest, learned more about food combining and timing, learned more about rational fasting, went back and re-learned how my various systems (digestive, respiratory, endocrine, etc.) work and what fuels it all the best based on my specific needs, and was fortunate enough to have a local plant-based healer/master herbalist/iridoligist help guide me through the drastic transition stages, along with a few other practitioners, all of whom were willing to barter, luckily.

I also stepped out of my perceived comfort zone and looked behind many curtains to see the whole story about how each thing I ate and drank arrived at my table, along with many other things I used in my day to day living. I was swimming in a sea of tox-sick-city, big time, to say the least, but it was all stuff that seemed so normal based on how I'd been raised, so I was really confused and not very comfortable with my changes, but I stuck with them, miraculously.

I visited several dairy farms in addition to a few others raising animals for meat. I live in a big ag area, so I'm surrounded by chances to look deeper, sometimes whether I want to or not. I currently live within ear shot of hearing dairy cows crying out for their babies/moms after they're separated. I noticed that I didn't recall ever observing any other species that continues to consume dairy into it's teen/adult years. I learned we absorb not only the "products", but also the energies of the things we eat, and after seeing/hearing what they go through, especially in the larger big industry scene, I was no longer okay exchanging any of my energies, be it monetary or otherwise, to encourage any more of that shit. Environmental impacts played a part, too.

I learned most folks can function quite healthily on a well-planned plant-based whole food vegan lifestyle with proper supplementation, so I dove right in and haven't looked back. Changed my life in many positive ways, also opened my eyes to many things I wasn't ready to see. Hardest damn thing I've ever done, but the payoff equals the effort. I also learned that just because something is vegan does not mean it's healthy. Not even close. Yet another hard-learned lesson, along with the multiple challenges of learning how to navigate my surroundings among all the things I no longer consume. Yikes.

Bach's brand flower remedies is the first place I ever heard of flower essences, then my master herbalist friend mentioned them, then I looked them up myself based on the flowers we have growing on our land. I refused to pay what they were asking for the retail stuff, so I learned how to make them. I posted a thread about my limited experience with them a while back: Are Flower Essences Really An Effective Healing Tool?

Hope that helps explain a bit better. Apologies for being so long-winded. Peace.
 
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