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OnlineNortherner
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Anyone dealt with a family member with fibromyalgia? * 1
    #26938141 - 09/16/20 12:24 AM (7 days, 3 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, 2 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, 2 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, 2 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, 2 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, 2 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, 1 hour ago)

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


--------------------
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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Re: Anyone dealt with a family member with fibromyalgia? [Re: Northerner] * 4
    #26938258 - 09/16/20 02:29 AM (7 days, 1 hour 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 (6 days, 19 hours 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 (6 days, 19 hours 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 (6 days, 18 hours 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 (6 days, 18 hours 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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Invisiblebirdeatingspider
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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, 16 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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OnlineNortherner
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Re: Anyone dealt with a family member with fibromyalgia? [Re: birdeatingspider]
    #26938678 - 09/16/20 11:38 AM (6 days, 15 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, 15 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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Offlinegopher
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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, 15 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, 15 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, 15 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, 15 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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Offlinegopher
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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, 14 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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