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Sun Sep 20, 2015, 12:21 PM

Would welcome any fibromyalgia references you have. (cross-post)

Cross-posted from Health, where I might get a response next month.



Thanks, all.

21 replies, 1730 views

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Reply Would welcome any fibromyalgia references you have. (cross-post) (Original post)
Bertha Venation Sep 2015 OP
antiquie Sep 2015 #1
Bertha Venation Sep 2015 #2
antiquie Sep 2015 #3
Bertha Venation Sep 2015 #4
Bertha Venation Sep 2015 #5
bettyellen Sep 2015 #7
TexasBushwhacker Sep 2015 #6
hopemountain Sep 2015 #8
TexasBushwhacker Sep 2015 #9
hopemountain Sep 2015 #12
Sherman A1 Sep 2015 #10
LiberalEsto Sep 2015 #11
Avalux Sep 2015 #13
bettyellen Sep 2015 #14
Bertha Venation Sep 2015 #17
bettyellen Sep 2015 #18
REP Sep 2015 #15
Bertha Venation Sep 2015 #16
REP Sep 2015 #20
mopinko Sep 2015 #19
Loryn Sep 2015 #21

Response to Bertha Venation (Original post)

Sun Sep 20, 2015, 12:44 PM

1. Cannabis oil, truly.

 

Writing in the journal Current Medical Research and Opinion, investigators at Germany's University of Heidelberg evaluated the analgesic effects of oral THC in nine patients with fibromyalgia over a 3-month period. Subjects in the trial were administered daily doses of 2.5 to 15 mg of THC and received no other pain medication during the trial. Among those participants who completed the trial, all reported a significant reduction in daily recorded pain and electronically induced pain. source


source

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Response to antiquie (Reply #1)

Sun Sep 20, 2015, 12:48 PM

2. antiquie, this almost made me cry --

I am looking for a job. I'm expecting drug tests.

I'll keep it in mind, though. If I don't get any help with whatever the rheumatologist says to take/do, I'll look up sources six months (probation) after I start working.

Thanks so much.

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Response to Bertha Venation (Reply #2)

Sun Sep 20, 2015, 12:53 PM

3. So, so sorry.

 

Maryland passed a crappy law last year that hasn't been implemented. What's wrong with those people?!

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Response to antiquie (Reply #3)

Sun Sep 20, 2015, 12:56 PM

4. The same thing that's wrong with every politician:

they're politicians.

I don't know. Maryland is a blue state (notwithstanding the current Republican governor), and the state house is savvy. God knows what's going on in Annapolis.

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Response to Bertha Venation (Original post)

Mon Sep 21, 2015, 08:36 AM

5. Monday morning kick.

In the cross-posted thread, Warpy said I'd have to narrow down my request some. But I don't know how to narrow it down. My doctor just referred me, on Friday, to a rheumatologist. I can't get in to see her until October 21.

I know precious little about fibromyalgia, so I'll welcome whatever you have. Again, thank you.

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Response to Bertha Venation (Reply #5)

Mon Sep 21, 2015, 02:44 PM

7. Hi Bertha! I'm going to recommend looking for info at either a Yahoo or

 

Google group. There are really great groups for every illness out there. people share information, tips and resources and support and you can get up to speed very quickly by searching a bust group.
In most cases either the google or yahoo is much more active and currently busy. You can pretty much tell how active by the number of posts that are recent. You just need to sign up for the rested email and ask to join.
I've used them for my parents and pets illnesses, car repair, toilet training cats all with great success!
Good luck B!

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Response to Bertha Venation (Original post)

Mon Sep 21, 2015, 02:38 PM

6. A general antiinflammatory diet probably can't hurt

http://www.everydayhealth.com/fibromyalgia-pictures/eat-well-to-help-fibromyalgia.aspx#01

http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

Just any FYI, my friend with fibro tried acupuncture and had a HORRIBLE response.

CBD oil (cannabis oil that is low in THC and doesn't get you high) is totally legal and showing great promise for fibro pain.

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Response to TexasBushwhacker (Reply #6)

Mon Sep 21, 2015, 02:53 PM

8. eliminating/avoiding nightshades

has made a tremendous difference in pain intensity and inflammation levels. however, following the blood type diet (d'adamo) for my type, which includes avoiding nightshades, has most helped reduce the hard, and tender inflammations around my body.

i went for the gradual elimination of the nightshades. it has been challenging and taken me 5 years to be strict (with an occasional slip when i cannot resist something i love). i no longer purchase nightshades nor keep them in my pantry or fridge. i do allow myself an occasional indulgence for a social event, well aware, i will pay the price for about 1 week.

when the pain does not allow me to rest nor sleep, i apply a strong diffusion of soaked and strained medical cannabis buds, stems, and leaves in organic (olive) oil and wrap with strips from an old tee-shirt. i use a traditional indigenous method to infuse as taught by my grandma. she indicated using the entire stem of the plant cut into pieces, stuffed into a jar before adding the oil or clean animal fat.

have been transitioning to the blood type diet and eating only organic grains, meats, and veggies since april and have lost 15 lbs.

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Response to hopemountain (Reply #8)

Mon Sep 21, 2015, 06:12 PM

9. Just keeping a food diary can help a lot

Some people do have trouble with nightshades, some don't. The same goes for dairy, gluten, grains in general. Just keeping track of what you eat and how you feel can be very revealing.

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Response to TexasBushwhacker (Reply #9)

Fri Sep 25, 2015, 04:55 PM

12. yes, absolutely..thanks nt.

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Response to Bertha Venation (Original post)

Mon Sep 21, 2015, 06:48 PM

10. Kicking

My spouse suffers from this as well (along with other ailments) and I will watch to see what answers might come up. Best of luck to you.

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Response to Bertha Venation (Original post)

Mon Sep 21, 2015, 07:05 PM

11. So sorry you have fibro

 

I've had it for years. Sometimes it flares up, usually due to stress. In recent years mine hasn't been too bad, but I've been having a flareup for at least a month due to stress.



Here's something I read about glutathione and fibro. (link) I don't know whether this approach works or not, but I do know that acetaminophen (such as Tylenol) depletes glutathione in the body. I have read that hospitals use glutathione on people who have overdosed on acetaminophen. Because of this, I have stopped using acetaminophen painkillers, and I wonder if that might be one reason that the fibro hasn't been too bad in recent years.

http://selfadjustingtechnique.com/how-glutathione-cures-fibromyalgia-and-how-to-supplement-for-it/

Maybe this website will be of use to you. http://www.fibromyalgiasyndrome.co.uk/

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Response to Bertha Venation (Original post)

Fri Sep 25, 2015, 07:08 PM

13. My mother has fibromyalgia.

She doesn't take any meds other than ibuprofen (on a really bad day). We have serious doubts about the effectiveness of antidepressants like Lyrica since the data show very little difference over placebo.

She eats healthy; as fresh as possible and has cut back on meat. She also doesn't carry around a lot of extra weight, when she was heavier her fibro was worse. But the big thing - she swears that moving her body is most effective. She does a stretching routine every morning and evening and during the day takes a walk outside or inside on the treatmill. But there are also days when she just has to listen to her body and rest because the fatigue is too much.

We've talked about what she might do if her symptoms get worse and will use cannabis.

Right now though, she's doing well. She's 72 and was diagnosed 8 years ago.

I hope this helps in some way, and I'm sorry you're having to deal with fibromylagia.

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Response to Bertha Venation (Original post)

Fri Sep 25, 2015, 07:33 PM

14. I would suggest looking for Yahoo and Google groups to see which are busiest lately....

 

for every disease, hobby or problem on the planet, there is an excellent google or yahoo group filled with people giving each other awesome advice. I have twice diagnosed my car's issues correctly when the mechanics were completely lost. And learned how to toilet train my cats, and care for one's IBD issues. They can be a life saver!

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Response to bettyellen (Reply #14)

Sun Sep 27, 2015, 08:50 AM

17. Thank you, bettyellen.

I didn't know that Google groups existed. I'll try there!

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Response to Bertha Venation (Reply #17)

Sun Sep 27, 2015, 01:38 PM

18. You're welcome, Bertha! Yahoo has often been better for me with medical issues,

 

but it's an odd thing...they will both probably have many options and some will be pretty much inactive and old. There is always a calendar showing how level of activity and some just never get off the ground and whither out, so skip those- you want a currently very active one that fits your needs! All you need is a google or yahoo email, and ask to join.

After you join, use keywords to search about your particular concerns and questions and I'm sure most of it will be discussed already.
I don't think I ever had to ask a question about my cats illness as there was already tons on every aspect of it posted but when I did post about specific car trouble describing the issues in detail, someone in Europe had the exact answer I needed within an hour. Both times. My mechanic was very spooked. I think he uses it now too, LOL.

Similarly, my veterinarian thinks I am an expert, because I ask the smartest questions and am up on all the treatments and diet recommendations, etc. They can be a really an amazing resource. I hope you feel better soon, Bertha! You are awesome and I am happy to be a small help. Good luck!











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Response to Bertha Venation (Original post)

Fri Sep 25, 2015, 11:12 PM

15. Be sure to have a sleep study done

I was once dx'd with fibromyalgia. I actually have severe mixed sleep apnea and degenerative arthritis. I don't have fibromyalgia.

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Response to REP (Reply #15)

Sun Sep 27, 2015, 08:48 AM

16. Had one last month.

I don't have the results yet. I wish they'd hurry up.

I know I have apnea; I've used a CPAP for years. This time the test included daytime naps, looking for, among other things, narcolepsy. I was there from 8:30 PM to 3:20 PM the next day. Ugh.

It's good to know, though, that a sleep study can shed light on a possible DX of fibromyalgia. Thanks to you, I'll be sure to call the sleep center tomorrow and ask for a copy of the report, so I can take it to the rheumatologist.

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Response to Bertha Venation (Reply #16)

Sun Sep 27, 2015, 06:18 PM

20. I was just misdiagnosed

I was in my late 20s, and told I was "too young, too thin and too female" to have sleep apnea and was told I had what was then the new thing to tell women with severe joint pain and excessive daytime sleepiness, periods of not breathing during sleep, waking up numerous times during sleep, etc. My overnight O2 sat was 60% - that's dangerously low - and I never got past Stage II sleep. For years, because of that assumption that young women can't have sleep apnea.

I've had two complete shoulder AC joint resections, hand surgery, and multiple PRP therapies on my forearms and my lifetime limit on steroid injection in my elbows due to the severe degenerative arthritis. If he'd bothered to run a CBC, an RF and ESR on me, it would have been obvious I don't have fibromyalgia (there is no test for fibromyalgia but what I do have does show up in bloodwork).

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Response to Bertha Venation (Original post)

Sun Sep 27, 2015, 01:52 PM

19. fwiw, mine has responded well

to cymbalta and lyrica. esp the cymbalta. i tried a lot of ad's, and this one is the first to do jack for me. fairly functional. getting through some tough times without my usual, um, over exploration of ways off the planet.

but yeah, the sleep study could shed some clues. i did that narcolepsy one, and boy was it a pain.

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Response to Bertha Venation (Original post)

Sun Sep 27, 2015, 07:10 PM

21. Yoga has helped me more than anything.

I went off of Morphine earlier this year. I have been on several drugs over the years, and don't want them in my life on a daily basis. I believe the stretching and core work have helped. I care for my elderly parents, and it helps me deal with stress as well.

I am currently having my first flare in over a year. I am using Ibuprofen and heat.

Marijuana is not something that I have used for pain, so I can't speak to that.

I hope you find something soon.

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