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OfflineNortherner
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Anyone dealt with a family member with fibromyalgia? * 1
    #26938141 - 09/16/20 12:24 AM (7 days, 8 hours ago)

My wife suffers from fibromyalgia. Some days it's okay, many days it's debilitating.

She often just wants to die, the pain is too much for her to bear and there seems no light at the end of the tunnel.

Anyone else dealt with this? I'd do anything to help her, but I don't know what to do. I feel so powerless. Any real life experience and advice would be greatly appreciated.

Much love

Northy.  :heart:


--------------------
The nearest we ever come to knowing truth is when we are witness to paradox.


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OfflineIce9
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner]
    #26938154 - 09/16/20 12:39 AM (7 days, 8 hours ago)

I haven't but you have my sympathies, fybromyalgia is extremely difficult to treat effectively, and the causes are often unknown.  Have the doctoros prescribed either pregabilin or gabapentin.  I've heard of some people having success managing pain from fybromyalgia with those drugs.


--------------------
Regarding Benzodiaepines: "They are a recreational drug, and being one doesn't exclude it's potential as a medicine." Yukon Cornelius


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Offlineichugwindex
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26938159 - 09/16/20 12:47 AM (7 days, 8 hours ago)

Thats rough man. The only person i met that had it did hard drugs to deal with it.


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Only hope can give rise to the emotion we call despair. But it is nearly impossible for a man to try to live without hope, so I guess that leaves Man no choice but to walk around with despair as his companion.


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OfflineIce9
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Re: Anyone dealt with a family member with fibromyalgia? [Re: ichugwindex]
    #26938165 - 09/16/20 12:54 AM (7 days, 8 hours ago)

Different disease, similar presentation.  My Mom had lung cancer, the only symptom was referred pain to her right arm and occasional numbness.  After she was diagnosed stage 3b small cell sarcoma, they plied her with various opiates and opioids.  Unfortunately she was intolerant of almost all of them, causing her headaches and extreme dysphoia.  Then the doctor suggest gabapentin.  It was a game changer, with surgery she was able to live a semi-normal life for 3 years, the whole time working as a mail carrier(demanding job).  It was only when the cancer came back that things got real bad, but I'm forever grateful for the doctor prescribing that drug off-label it mad such a huge difference.


--------------------
Regarding Benzodiaepines: "They are a recreational drug, and being one doesn't exclude it's potential as a medicine." Yukon Cornelius


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Offlineichugwindex
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26938173 - 09/16/20 12:58 AM (7 days, 8 hours ago)

Poor gal had dudes leave her because she was in too much pain 4 sex. I hope shes ok


--------------------
Only hope can give rise to the emotion we call despair. But it is nearly impossible for a man to try to live without hope, so I guess that leaves Man no choice but to walk around with despair as his companion.


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OfflineIce9
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Re: Anyone dealt with a family member with fibromyalgia? [Re: ichugwindex]
    #26938183 - 09/16/20 01:03 AM (7 days, 7 hours ago)

Quote:

ichugwindex said:
Poor gal had dudes leave her because she was in too much pain 4 sex. I hope shes ok




She's fine, you need to find a specific bit of land and a megaphone to converse with her, but other than that I'd say say she's doin dandy.


--------------------
Regarding Benzodiaepines: "They are a recreational drug, and being one doesn't exclude it's potential as a medicine." Yukon Cornelius


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Offlineichugwindex
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26938224 - 09/16/20 01:45 AM (7 days, 7 hours ago)

I dont think it makes people deaf? Maybe youre just having a laugh?


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Only hope can give rise to the emotion we call despair. But it is nearly impossible for a man to try to live without hope, so I guess that leaves Man no choice but to walk around with despair as his companion.


Edited by ichugwindex (09/17/20 05:23 AM)


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Onlinemorrowasted
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner] * 4
    #26938258 - 09/16/20 02:29 AM (7 days, 6 hours ago)

Fibromyalgia is sort of a catch all diagnosis for diseases doctors cant pinpoint. Sometimes it may be an unknown genetic disorder, sometimes it may be a conversion disorder. A lot of doctors dont even accept that it is a real disorder unto itself


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InvisiblePsychoReactive
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner]
    #26938450 - 09/16/20 08:09 AM (7 days, 49 minutes ago)

Get them onto 5HTP supplements. they help with pain, sleep and depression.

Also look into colloidal silver and DMSO.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: morrowasted] * 4
    #26938460 - 09/16/20 08:16 AM (7 days, 42 minutes ago)

Morrow with the facts! :thumbup:

Its a complicated diagnosis. I have serious chronic pain. I was diagnosed over 10 years ago with RA at the time but I think it might be something else. I have strong evidence that I also have fibro but not officially diagnosed for a million different reasons. I've had herniated disks as well. As I'm typing this out my wrists, arms, hands all hurt. The weather hasn't been helping either, recent drops in barometric pressure, its been raining so ya bones and muscles hurt all over. I recently just got past a pretty bad flare up with my hips and lower back. I've been dealing with this since I was a teenager. I'm still young but I feel like an elderly lady sometimes :sadyes:

I was on gaba at one point and absolutely hated it. Worst brain fog ever and didn't do much to alleviate my pain but it does work for some. There's also the Immunosuppressants, depending on what the cause is but Ive never been on them so I can't say much there. What I found that does work for me are cannabis concentrates, aspirin (low dose) gives me some relief from general muscle cramps cause of the occasional restless leg syndrome. Flower works too but bongs or vapes I found are the best ROA, if using flower. CBD works great too, however I don't have much experience with the hemp derived ones. Opiates sorta work but I've stayed away from them for obvious reasons. Micro dosing L or mush has worked for me in the past but it can be tricky getting the dose right and tolerance builds fast for daily use. The only time in the last decade where I can remember being 100% pain free was with a hefty dose of L and no tolerance. Unfortunately after a bit, all the symptoms come back and its not very sustainable to be tripping that hard all the time. Its worth it assuming she's has the right factors and conditions to do it. Obviously not when going through extreme mental crisis but the relief it can bring to the body is worth the temporary madness. Thinking about my last acid trip makes me so happy. I could dance again and move the way I used to before all of this started. 

Apart from drugs, I stretch (yoga), meditate and workout daily or try my best to. I try to avoid stress and triggers, which can be super difficult, especially in times like these. I also use a TENS machine for my muscle cramps. There are days where you just want to give up and thats ok. You can't win everyday. What really frustrating is that because its not something thats obviously visible like a broken bone, people have the tendency to think you're past it and all better when you're having a good day. None of my friends understood it growing up, family didn't get it either. It was crappy all around and just added to the emotional toll. Sometimes I go through days where I just don't want to talk to anyone, disconnect, completely self isolate. I also may seem "bitchy" but its the pain, not to excuse shitty behavior either but it is what it is. We all have our bad days but when you have chronic pain, especially when its debilitating like this you're gonna have a lot more of those days, practicing self care and being patient with each other is all you can do. Learning her signs of when flare ups are about to happen is crucial, general body language. If I had a partner who could off load daily tasks like just washing dishes, general cleaning etc.. I'd be so happy. Its the little tasks every day that wear me out the most on my worst days. 

Lastly its not just the physical pain, its everything compounded with what you're going through in life too. Please take care of yourself Northerner! Try not to be too hard on yourself. I'm sure she wouldn't want you to be miserable either. Relationships are so tough as is, this doesn't make it any easier. Obviously this can lead to depression and other mental health issues, one can only be so resilient. That goes for both you and your partner. It wouldn't hurt to talk to a therapist if you don't have a close friend or family to vent to. Its absolutely crucial to have a strong support system if all else. Having a partner when having serious conditions like this is a double edged sword sadly. You don't want to burden them, which creates so much guilt, adds to the stress but at the same time its the best in those moments when you really need that kind of love. That connection, that love truly balances everything out.

Anyways this was super long, apologies for the essay and idk if any of it will help y'all but I hope you both find some solace in the coming days sooner than later :heart: :hug:

tldr; I have serious chronic pain, please be patient with those of us that do.


--------------------
Pull the blinds and change their minds....


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OfflineNewbieS
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner]
    #26938487 - 09/16/20 08:52 AM (7 days, 6 minutes ago)

My mother suffered from it for years.  It killed her when I was 17.  Actually she killed herself, but fibromyalgia played a huge part in it.  The doctors stopped giving her pain meds because they didn't believe her and back then it couldn't even really be detected.

I hope your wife finds relief.  It's a horrible way to live.  :sad:


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Cosmic_Flame]
    #26938490 - 09/16/20 08:56 AM (7 days, 2 minutes ago)

Sorry to hear about  your wife bruh, my mother got parkinsons and its shit.

She even obtained legal weed prescription but it didnt help, actually its a long story, but at the end weed didnt help (when it should have)


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner] * 2
    #26938577 - 09/16/20 10:34 AM (6 days, 22 hours ago)

Sorry to hear of how much this is taking its toll on you both. My mother has Fibro, I have Myofascial Pain Syndrome, which is the muscle casings vs. nerve endings in fibro.
It really sucks, having flare ups that always attack at opportune moments, and the general misunderstanding from society and even our medical industry.

A few things have helped me manage to where I have very few flare ups, and pain level low enough to function-

A rehab center. For an idea, the one I attended is called Rosomoff Pain Center in Miami, FL. They were one of the first facilities to use a comprehensive approach to managing pain. After imaging and Biofeedback, a tailored plan was made, and this was made up of Physical Therapy including massage therapy, Occupational Therapy, Hypnosis, and Psychotherapy- as the mental aspect to pain syndromes cannot be ignored. Everything overseen and run by physicians. I stayed there for a month and came out a new person. You have your binder for life, so the specific stretches and exercises can be maintained going forward.

One thing I super struggled with there was moving. When you are in that much pain, you don't want to move or be touched, it's unbearable. Introduce her to her favorite new friend- ICE. Get a few body wrap sized medical quality ice packs, even if there is no current flare up, ice will constrict the vessels and block pain signals. Some people say heat works better, and it can be comfortable for sore muscles. But when it comes to therapy, ice is where it's at. Ice first so she can stretch and be able to, then  with a 'fake it til' you make it' approach, her forcing herself to do light cardio or stretching despite the immediate brain feedback to stop, it will make the condition easier to bear in the future.
Having my dog demand regular exercise helps me get out of the house on schedule. Perhaps the two of you can commit to walks after dinner. Even around the block will help.


Without reading his post, I can bet Ice9 said Gabapentin/Pregabalin. I've been on it for 15 years, originally prescribed for inflammation/pain, now for seizures, in addition.
Works better than most meds I've tried, and thee have been many. 
This drug is great, but your body will become dependent over a period of time. I go through withdrawal without mine, it must be stated. IMO, your wife's condition is advanced enough that it shouldn't matter, whatever helps. Especially if you can stay away from narcos, they are not as effective and more addictive.

Last but not least, Kratom.  I dose 3 times a day, backed with a cup of Tension Tamer tea(Get her this tea, by celestial seasons regardless, it's my saving grace and lowering stress lowers pain!) it allows my pain level to dip enough that I can push through and do those stretches and exercises. Same disclaimer as above.

And just a note on mental health. Being in chronic pain really does a number on one's psyche. It's either prior depression triggering the pain, or mental health issues as a result of the pain, but it can't be ignored. Talk therapy would be a great addition, as well.

Whatever you do, come up with a multifaceted plan, surround the enemy and strike swiftly.

Please keep us updates, Best Wishes!


--------------------

'Well I have become the Devil- To realize, that I'm Divine.
I have been, living with demons.. Last night I left them by the Fire '


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OfflineNortherner
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Re: Anyone dealt with a family member with fibromyalgia? [Re: birdeatingspider]
    #26938678 - 09/16/20 11:38 AM (6 days, 21 hours ago)

Thanks a much for your responses everyone, particularly Cosmic Flame and birdeatingspider. It's good to talk about this. It makes me feel less alone.

We've been dealing with this for many years now, tried so many things. Some things seem to help but then stop helping, others seem to do nothing but slowly over time improvement shows. Then it's like it was all for nothing. Of all the things that were mentioned the only thing she hasn't tried is cannabis. And many many more things have been tried. The problem with her using cannabis is she dispenses medication at a pharmacy and if she makes a mistake people can die. I think I might bring it up again, just maybe it really can help.
She's on a waiting list now almost 2 years for a highly specialised  rhuematology clinic that is known to have helped a lot of people. Rona has blown out the admission schedule ridiculously. She should have been in this year already. It's like it's never going to happen, though it will.

Sometimes it seems that there's no hope in sight. Other times it seems manageable and that everything will be fine. Coping with the psychological aspect can be hard. I suspect if the kids weren't at home she would have commited suicide by now. She's tried twice in recent years, but nothing final enough that I wasn't able to save her. Last time she resented me for quite a while for saving her. That's some weird shit to live with.

I'm just hoping tomorrow will be better. Some days are pretty hard.


--------------------
The nearest we ever come to knowing truth is when we are witness to paradox.


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Invisiblelarry.fisherman
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner]
    #26938713 - 09/16/20 11:59 AM (6 days, 20 hours ago)

I may not have fibromyalgia or know much about it aside from pain, but i have enough of my own problems that i feel confident saying to just try to make life feel worthwhile however that may be. Give her lots of love, make sure she knows she's not a burden, and help her find herself and the things she needs to be happy. I dont know much about her life or her limitations but maybe she can find a way to be proud of herself with a computer. There are a million jobs online and all the cool ones need someone like her with lots of time(i assume).

Or idk if she has mobility issues maybe you can help her find some freedom? My first thought is like a recumbent bicycle with an electric motor because she wouldnt fall off or have to pedal. Maybe theres a hobby she'd like. She really probably needs some independence if she's truly debilitated. You have to give depressed people reasons to be happy because being depressed regardless of your circumstances amounts to a choice that can seem so very black and white. But i will say that whatever she says she's grateful for you. She wouldn't still be trying if she weren't, right? Plenty of people have been stopped from doing things, woken up and went right back at it. Because of that i think you can be confident that her deepest self is happy, with you and your family. Life is just harder for some people. Best of luck, hope you feel better


Edited by larry.fisherman (09/16/20 11:59 AM)


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Onlinegopher
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Re: Anyone dealt with a family member with fibromyalgia? [Re: larry.fisherman]
    #26938722 - 09/16/20 12:02 PM (6 days, 20 hours ago)

from what Ive read in this thread it sounds kinda like a autoimmune issue, I would try a carnivore diet if I had it


--------------------
In essence, your body knows better than the experts how much salt it needs--and telling someone to restrict their salt intake is akin to telling someone to restrict their water intake when they are thirsty. It just makes no biological sense.

The salt fix -- James DiNicolantonio -- Doctor of pharmacy and cardiovascular research scientist

:kratom:


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Invisiblelarry.fisherman
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Re: Anyone dealt with a family member with fibromyalgia? [Re: gopher] * 4
    #26938728 - 09/16/20 12:05 PM (6 days, 20 hours ago)

You and your damn diets. If i could make a caricature out of this you'd be Diet Boy but you look like a walking marshmallow and your super power is just eating different food every day and calling it a diet.. :lol:


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OfflineNear Dylan
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner] * 1
    #26938758 - 09/16/20 12:26 PM (6 days, 20 hours ago)

My friend is doing neuroscience type of study shit at the university he goes to and he is doing a lot of trials on treating fibromyagia. He said he is very skeptical on the existence of the disease at all and believes that it is a combination of things that lead to symptoms like that, given how wildly inconsistent the treatment methods are and how wildly different people's reactions to it are and everything. Really weird. I hate science and medicine.

So yeah I dont mean to be a downer but your wife may have to be patient... He said he doesnt see us figuring out that disease any time soon.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner] * 4
    #26938761 - 09/16/20 12:28 PM (6 days, 20 hours ago)

I’ve treated the juvenile form at work. The cause & treatment is actually known now, but translating that into the adult world is difficult. Basically it’s a short circuit in the nervous system. Typically a pain signal travels from the stimuli to the brain, and stops when the stimuli is removed. In the case of amplified pain, the pain signal travels to the brain, but then bounces back to nerves around blood vessels. This causes the vessels to constrict, which in turn causes another pain signal that travels through the same short circuit. This can be caused by injuries, and/or stress. Anxiety & stress is the most common denominator in these cases. The effective treatment is not medication. Effective treatment combines psychotherapy with intensive OT/PT to work on the psychological components, and burn out the short circuits via strengthening, conditioning & desensitization. This is a highly effective method that has been used in pediatrics for years. Unfortunately, the adult world is taking a while to get up to speed on this.

Tough Dx to deal with for sure.....for everyone involved. Good luck Northerner, hopefully she gets it under control soon :hug:


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Onlinegopher
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Re: Anyone dealt with a family member with fibromyalgia? [Re: larry.fisherman]
    #26938775 - 09/16/20 12:33 PM (6 days, 20 hours ago)

Quote:

larry.fisherman said:
You and your damn diets. If i could make a caricature out of this you'd be Diet Boy but you look like a walking marshmallow and your super power is just eating different food every day and calling it a diet.. :lol:





There quite a few people with autoimmune disorders who claim to do a lot better on a carnivore diet, I tried searching quickly and found this little quip on fibromyalgia https://meatrx.com/lees-fibromyalgia-anxiety-and-depression-symptoms-have-cleared-up-on-a-carnivore-diet/


--------------------
In essence, your body knows better than the experts how much salt it needs--and telling someone to restrict their salt intake is akin to telling someone to restrict their water intake when they are thirsty. It just makes no biological sense.

The salt fix -- James DiNicolantonio -- Doctor of pharmacy and cardiovascular research scientist

:kratom:


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OfflineNear Dylan
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Re: Anyone dealt with a family member with fibromyalgia? [Re: gopher]
    #26938778 - 09/16/20 12:35 PM (6 days, 20 hours ago)

meatrx. Sounds like a reputable source with no implicit bias.


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OfflineO_Dweeds
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Near Dylan]
    #26938788 - 09/16/20 12:40 PM (6 days, 20 hours ago)

Never underestimate the power of the body of christ, AKA the Golden Teacher.

Micro-dose with CBD/THC cream. As the pain fades and things begin to loosen up begin stretching 2-3 a day. Almost forgot staying WELL hydrated is key; determines how much energy the body can use!

Love & Faith conquer all things!


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Oxygen. Water. Neil Young

Our word "planet" comes from the Greek word planetes, meaning "wanderer."

"There ain't no revolution, only evolution, but every time I'm in Georgia I eat a peach for peace."
Gregg Allman


Edited by O_Dweeds (09/16/20 12:41 PM)


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OfflineNear Dylan
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner] * 1
    #26938799 - 09/16/20 12:46 PM (6 days, 20 hours ago)

I dont think you need any more evidence as to why you should not look for advice on the shroomery


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Invisiblelarry.fisherman
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Re: Anyone dealt with a family member with fibromyalgia? [Re: O_Dweeds]
    #26938809 - 09/16/20 12:55 PM (6 days, 20 hours ago)

Quote:

O_Dweeds said:
Never underestimate the power of the body of christ, AKA the Golden Teacher.

Micro-dose with CBD/THC cream. As the pain fades and things begin to loosen up begin stretching 2-3 a day. Almost forgot staying WELL hydrated is key; determines how much energy the body can use!

Love & Faith conquer all things!



Completely ignoring everything else you just said.. for good reason.. psychedelics are known for enhancing pain as much as they are for dulling it, the latter of which tends to lean more towards the time after the extensive experience of using a psychedelic.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Dark_Star] * 2
    #26938831 - 09/16/20 01:15 PM (6 days, 19 hours ago)

Quote:

Dark_Star said:
The effective treatment is not medication. Effective treatment combines psychotherapy with intensive OT/PT to work on the psychological components, and burn out the short circuits via strengthening, conditioning & desensitization. This is a highly effective method that has been used in pediatrics for years. Unfortunately, the adult world is taking a while to get up to speed on this.




I agree with this completely. My mother-in-law has had it for awhile. I do think that medication has been a life saver for her as it kept her symptoms manageable at her worst, but long-term counseling and physical/occupational therapy are what's gotten her back on her feet and thriving again. Stretching and strengthening seem pretty vital for long-term success with fibromyalgia, especially since the pain often pushes them to want to be more sedentary.. which will exasperate things long-term.

Lots of good advice here from people. I don't have fibro but I do have a chronic nerve pain condition. The best thing for me was therapy, both physical and psychological. For symptoms though, a massage gun has been a life-saver. I have a heavy duty one which could probably drill a hole through a wall. There's all the claims about them increasing circulation, reducing inflammation etc... it hasn't really made my muscles noticeably looser but it pretty much kills the pain for a couple hours, sometimes much longer.

As C_F mentioned a TENS unit can help with pain, one that also has EMS can help because it causes contractions in the muscles, which over time can reduce spasms and possibly build strength in problem areas. I have a rub from that has capsaicin oil, mint and CBD, it really helps knock the pain down because you get the burn of capsaicin, the freeze from the mint, and whatever CBD actually does. Expensive as hell though, I'm going to make my own without the CBD and see how it works. I also have a thc/cbd tincture that's a full plant extract, a small dose of that seems to help knock pain down a few levels and boost my mood. Higher doses actually make me hyper-focused on the pain and all the negative feelings that go with it.


I usually don't recommend fringe methods because most really won't help, but one that's worked for me and I've heard that it's worked for others who have fibromyalgia is the Wim Hof method. Essentially it's a 10-minute breathing/hyperventilation exercise which floods your system with adrenaline and oxygenates/slightly alkalizes your blood, followed by a breath hold which spikes levels of CO2 to create a panic gasp response which you can train yourself to relax through, combined with cold exposure therapy (cold showers or ice baths typically). There's been some promising scientific research into it showing how it lowers inflammatory blood markers and modulates the immune response amongst other things, but still lots of unknowns. I started doing it daily a month ago to help with prostatitis I'd been struggling with for months, it essentially cured that in 2 days and has helped a lot with my nerve pain too. Plus it gets me a pretty trippy "high" towards the end of the breathing technique, and a lot more energy throughout the day.

Good luck man, the fact that you're on here seeking advice shows you're probably the exact type of supportive partner she needs through this. With these 'silent' diseases it can be especially tough, our society is typically not very empathetic towards people who look well but are not.


Edited by feevers (09/16/20 01:29 PM)


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Re: Anyone dealt with a family member with fibromyalgia? [Re: feevers]
    #26938836 - 09/16/20 01:18 PM (6 days, 19 hours ago)

I do wonder about a hot tub or cryotherapy


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Re: Anyone dealt with a family member with fibromyalgia? [Re: larry.fisherman]
    #26938845 - 09/16/20 01:24 PM (6 days, 19 hours ago)

Get her a nice foot bath tub/machine :awesome:



I got one for my ma, she loves it


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner]
    #26938927 - 09/16/20 02:20 PM (6 days, 18 hours ago)

My Grandma has it and she says it's the most painful thing she has experienced. I have a habit of cracking my knuckles and I accidentally did it beside her and she ended up crying in pain just from the thought and sound of my knuckles being cracked.. I felt so bad.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Kelazam] * 1
    #26939706 - 09/16/20 09:29 PM (6 days, 11 hours ago)

Thank you all so much for your feed back, especially Dark Star and feevers.

As you guys can imagine these sorts of trials in life are challenging and it's good to get feedback with tangible knowledge and advice. There's so much information out there and doctors just want to sling one pill after the next but sometimes don't really think about all the implications.

:heart:


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26939964 - 09/17/20 02:38 AM (6 days, 6 hours ago)

Quote:

Ice9 said:
Quote:

ichugwindex said:
Poor gal had dudes leave her because she was in too much pain 4 sex. I hope shes ok




She's fine, you need to find a specific bit of land and a megaphone to converse with her, but other than that I'd say say she's doin dandy.




To be clear I wasnt trying to make a joke or be mean or anything when I made that comment. I was talking about an old friend. I really wish you didnt give me a zero over what I said.

I had no idea it could make you deaf


--------------------
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Re: Anyone dealt with a family member with fibromyalgia? [Re: ichugwindex]
    #26939966 - 09/17/20 02:40 AM (6 days, 6 hours ago)

Quote:

ichugwindex said:
Quote:

Ice9 said:
Quote:

ichugwindex said:
Poor gal had dudes leave her because she was in too much pain 4 sex. I hope shes ok




She's fine, you need to find a specific bit of land and a megaphone to converse with her, but other than that I'd say say she's doin dandy.




To be clear I wasnt trying to make a joke or be mean or anything when I made that comment. I was talking about an old friend. I really wish you didnt give me a zero over what I said.




Sounds an awful like a joke in poor taste, good to see you care enough about your rating this bothers you, it provides me with some small satisfaction.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26939969 - 09/17/20 02:43 AM (6 days, 6 hours ago)

I wasnt trying to joke. I dont understand how you took what I said that way.


--------------------
Only hope can give rise to the emotion we call despair. But it is nearly impossible for a man to try to live without hope, so I guess that leaves Man no choice but to walk around with despair as his companion.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: ichugwindex]
    #26940004 - 09/17/20 03:25 AM (6 days, 5 hours ago)

... I hope others chime in, about your use of specific words and how a normal personal would not choose those words except to troll/joke.  Just end the convo here cause I am dangerously close to my no ignoring people rule.


--------------------
Regarding Benzodiaepines: "They are a recreational drug, and being one doesn't exclude it's potential as a medicine." Yukon Cornelius


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26940111 - 09/17/20 07:04 AM (6 days, 1 hour ago)

Quote:


Essentially it's a 10-minute breathing/hyperventilation exercise which floods your system with adrenaline and oxygenates/slightly alkalizes your blood, followed by a breath hold which spikes levels of CO2 to create a panic gasp response



I am confused by this. Hyperventilating does make your blood more alkaline by expelling co2... so when you say the breath hold "spikes co2"... you mean within the context of not having as much as you normally do? Seems to me if you wanted to really "spike co2" you would breathe into a paper bag repeatedly and then hold your breath after.


I have heard multiple other people vouch for wim hof. It reminds me somewhat of dragon breath in yoga but it isnt quite the same.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: morrowasted] * 1
    #26940138 - 09/17/20 07:39 AM (6 days, 1 hour ago)

Quote:

morrowasted said:
Quote:


Essentially it's a 10-minute breathing/hyperventilation exercise which floods your system with adrenaline and oxygenates/slightly alkalizes your blood, followed by a breath hold which spikes levels of CO2 to create a panic gasp response



I am confused by this. Hyperventilating does make your blood more alkaline by expelling co2... so when you say the breath hold "spikes co2"... you mean within the context of not having as much as you normally do? Seems to me if you wanted to really "spike co2" you would breathe into a paper bag repeatedly and then hold your breath after.


I have heard multiple other people vouch for wim hof. It reminds me somewhat of dragon breath in yoga but it isnt quite the same.




Spike probably isn't the best term. You breathe fully out on the exhale and then hold your breath with no oxygen in your lungs. As CO2 builds, your anxiety response gets triggered and you want to gasp for air, but you can train yourself to resist that anxious response for a few minutes. So it's spiking in relation to where it is was when you were hyperventilating, but might really only reach normal or slightly elevated levels.

During the breathing since there's less CO2 in the blood the oxygen will have a stronger affinity to hemoglobin and won't end up in the tissues as much, I'm not sure if that's the cause but usually on my first round of breathing my legs and hands go completely numb and tingly. Feels great in a weird way, the head rush after round 3 is pure euphoria and clarity.

It's pretty similar to Tummo breath, the one that got famous for monks being able to be out in frigid temperatures and melt snow/ice or dry off wet blankets with their body temperatures. It's extremely simplified though, 30-40 deep hyperventilations, breath hold after the last exhale, inhale deeply once the gasp reflex get too powerful and hold for 15 seconds, exhale and start over for 3 rounds.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: feevers]
    #26940158 - 09/17/20 08:08 AM (6 days, 50 minutes ago)

Ive tried wim hof before even though i didnt bother with the full explanation on the recommendation of a friend and it definitely makes me tingle and feel lightheaded. I didnt get any kind of lasting mood changes. Ill give it a shot again later today


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Re: Anyone dealt with a family member with fibromyalgia? [Re: morrowasted]
    #26940343 - 09/17/20 10:44 AM (5 days, 22 hours ago)

You're blood gets acidic if you hyperventilate, hold your breath too long due to a build of CO2 disssolved in blood as carbonic acid.


--------------------
Regarding Benzodiaepines: "They are a recreational drug, and being one doesn't exclude it's potential as a medicine." Yukon Cornelius


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26940430 - 09/17/20 11:57 AM (5 days, 21 hours ago)

It's a really slight alkalization, hyperventilation causes it to get more alkaline and the breath hold likely isn't long enough to bounce back and make the blood more acidic than baseline. I've seen people promote it for all different things because of the alkalization, but I don't think it's sustained for long enough to do much. Other effects they've measured are promising/interesting though
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034215/

I just like it because of the brief rush/euphoria and increased energy, as well as the fact that only a few sessions of it got rid of chronic prostatis I'd had for 3 months. My guess is the breathing helped clear up some some stress/tension that was contributing to the condition, and the hot/cold contrast may have helped relax my muscles as well. Jumping in an ice bath and feeling relaxed and not even shivering is a pretty wild experience too, it's going to be in the 30's the next couple nights and I'm planning on some lake swimming :omgawesome:


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26940457 - 09/17/20 12:23 PM (5 days, 20 hours ago)

Quote:

Ice9 said:
You're blood gets acidic if you hyperventilate



not normally. when you hyperventilate, you end up expelling CO2 when you breath out faster than your body produces it. therefore reducing the amount of CO2 in your blood by hyperventilating reduces the acidity of the blood, or increases the alkalinity.

https://emedicine.medscape.com/article/301680-overview

this is why when someone is hyperventilating, for example during a panic attack or while giving birth, it can be helpful to have them rebreathe the carbon dioxide they expel, as with a paper bag.

you are right about holding your breath causing CO2 to build up though. for the same reason, the body is producing CO2 faster than you're expelling. this leads to what is called respiratory acidosis, which is commonly seen in patients with pneumonia (and thus with COVID).



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Re: Anyone dealt with a family member with fibromyalgia? [Re: morrowasted]
    #26940474 - 09/17/20 12:37 PM (5 days, 20 hours ago)

Yep, before morning coffee, had hyperventilating backwards. Oops :rofl2:


--------------------
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9]
    #26940921 - 09/17/20 05:38 PM (5 days, 15 hours ago)

I forgive you a love any opportunity i get to nerd out about health sciences anyway


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Re: Anyone dealt with a family member with fibromyalgia? [Re: morrowasted] * 3
    #26941029 - 09/17/20 06:55 PM (5 days, 14 hours ago)

Well my wife was basically bed ridden yesterday. I got the meds she was on that are supposed to be helping and confiscated them. Called in another doctor we haven't met before and she prescribed amyltriptaline and moxicam. When I got up this morning so did my wife, she actually smiled. I was amazed and overjoyed.

These drugs aren't even supposed to start working properly for a week and in a single day the improvement is spectacular.

Long term I don't know how sustainable these meds are, but I'm grateful for now.


--------------------
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner]
    #26941558 - 09/18/20 02:06 AM (5 days, 6 hours ago)

the moxicam is an NSAID so taking it all the time could result in other health problems. hopefully it is the amitrypaline doing most of the heavy lifting. maybe just use the moxicam for a short period of time until the other is able to kick in and work its magic, i dunno. best wishes


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Re: Anyone dealt with a family member with fibromyalgia? [Re: morrowasted]
    #26941568 - 09/18/20 02:25 AM (5 days, 6 hours ago)

Amitryptyline is an old school tricyclic antidepressant,  it actually can com with a lot of adverse side effects, but for some people it works like magic.


--------------------
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Re: Anyone dealt with a family member with fibromyalgia? [Re: gopher]
    #26941585 - 09/18/20 02:37 AM (5 days, 6 hours ago)

Quote:

Dark_Star said:
I’ve treated the juvenile form at work. The cause & treatment is actually known now, but translating that into the adult world is difficult. Basically it’s a short circuit in the nervous system. Typically a pain signal travels from the stimuli to the brain, and stops when the stimuli is removed. In the case of amplified pain, the pain signal travels to the brain, but then bounces back to nerves around blood vessels. This causes the vessels to constrict, which in turn causes another pain signal that travels through the same short circuit. This can be caused by injuries, and/or stress. Anxiety & stress is the most common denominator in these cases. The effective treatment is not medication. Effective treatment combines psychotherapy with intensive OT/PT to work on the psychological components, and burn out the short circuits via strengthening, conditioning & desensitization. This is a highly effective method that has been used in pediatrics for years. Unfortunately, the adult world is taking a while to get up to speed on this.

Tough Dx to deal with for sure.....for everyone involved. Good luck Northerner, hopefully she gets it under control soon :hug:



I think the confusion is largely because it's new and because alot of things are misdiagnosed as fibro. And instead of confirming the diagnosis for trials they just power on because the medical industry and science in general has other problems.

It's the bipolar disorder and IBS of chronic pain. A point where doctors aren't sure but the shoe is close enough to fitting so they can move on. Doctors, ime, are really really discouraged from sticking to triage phase.


Source: I've been misdiagnosed a million times. Often after a single test or interview or gloved finger in my ass. And a ton of research. The average wait time to land on a diagnosis that sticks for chronic disease is 7 years. Seven fucking years of not knowing if you're dying and being dismissed.


But on that note there's also extremely helpful support groups out there. The fibromyalgia Reddit might be a place to start.
Quote:

gopher said:
Quote:

larry.fisherman said:
You and your damn diets. If i could make a caricature out of this you'd be Diet Boy but you look like a walking marshmallow and your super power is just eating different food every day and calling it a diet.. :lol:





There quite a few people with autoimmune disorders who claim to do a lot better on a carnivore diet, I tried searching quickly and found this little quip on fibromyalgia https://meatrx.com/lees-fibromyalgia-anxiety-and-depression-symptoms-have-cleared-up-on-a-carnivore-diet/



I'm sure someone has said it but people have said that about the juice diet, veganism and paleo. All in all I'm certain the thing that makes people feel better is the reduction of sugar, excessive fats, and fresh nutrient rich food.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: CookieCrumbs]
    #26941592 - 09/18/20 02:43 AM (5 days, 6 hours ago)



Haven't seen this but the rest of this guy's vids are good. Lmk what you think. Someone quote it so morrow can see. He ignored me.


--------------------

Ephesians 6:12
For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.
Psalm 12:6
The words of the Lord are pure words: as silver tried in a furnace of earth, purified seven times.
Hebrews 11:3
Through faith we understand that the worlds were framed by the word of God, so that things which are seen were not made of things which do appear.
Revelation 3:11
Behold, I come quickly: hold that fast which thou hast, that no man take thy crown.

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Re: Anyone dealt with a family member with fibromyalgia? [Re: CookieCrumbs] * 1
    #26941594 - 09/18/20 02:45 AM (5 days, 6 hours ago)

I don't know if its available to the public, but there is a very simple computer program out there that pictures pain as a fire. a 10 is roaring bonfire, while a 1 is a candle. People who used this program and focused their mind on making the fire smaller, saw concomitant reductions in pain levels. Amazing what the brain can do.


--------------------
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Re: Anyone dealt with a family member with fibromyalgia? [Re: Ice9] * 2
    #26941615 - 09/18/20 03:38 AM (5 days, 5 hours ago)

I credit kratom with giving me my life back, and it absolutely did, but it's at most half of my regular pain management now. Learning how to put the pain down is something the brain can do... I'm certain that any subconscious thing it does can be manipulated. But it wasn't as simple as ignoring it.

I tried to stick to the military saying for a while "Pain is mind over matter. You don't mind, it don't matter." For a while.

At some point you do mind and it does matter. It's a shitty way to address long term pain.


It takes a very delicate mental formula to get pain from a 8 to a 4 or less. And
I'm basically playing that game every single day. The mental part and lifestyle stuff. It can be exhausting and I tend to get real pissed at things wasting my energy. Not only is it worse on it's own with stress, anxiety, or exhaustion, but the inability to focus is such a terrible obstacle to that self management.


I've been very seriously considering quitting my job lately because it's a stressful distraction. I'm stressed/distracted = ability to manage my shit goes down = performance at work goes down = more pain = everything makes everything else suck more



I don't think anyone will manage chronic pain without a holistic approach and it's a tough balancing act sometimes.


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Shiithead]
    #26943822 - 09/19/20 12:15 PM (3 days, 20 hours ago)

Quote:

Shiithead said:


Haven't seen this but the rest of this guy's vids are good. Lmk what you think. Someone quote it so morrow can see. He ignored me.





You check out this video northerner? He usually has his sources posted in his slides and at the end of his slides if you have any doubts. Shoot him an email if you have any questions.


--------------------

Ephesians 6:12
For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.
Psalm 12:6
The words of the Lord are pure words: as silver tried in a furnace of earth, purified seven times.
Hebrews 11:3
Through faith we understand that the worlds were framed by the word of God, so that things which are seen were not made of things which do appear.
Revelation 3:11
Behold, I come quickly: hold that fast which thou hast, that no man take thy crown.

Family


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Re: Anyone dealt with a family member with fibromyalgia? [Re: Shiithead]
    #26947319 - 09/21/20 09:25 AM (1 day, 23 hours ago)

I knew carnivore would cure it
be


--------------------
In essence, your body knows better than the experts how much salt it needs--and telling someone to restrict their salt intake is akin to telling someone to restrict their water intake when they are thirsty. It just makes no biological sense.

The salt fix -- James DiNicolantonio -- Doctor of pharmacy and cardiovascular research scientist

:kratom:


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Old Faithful Seed Bank
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