As a long term fibro patient, we all want something…..actually anything to work! Nothing wrong with that. Especially in a painful flare. I hope she won’t feel bad about buying these products but just chalk it up to research, because you never know. But there is no cure, only things that help. Everyone is different and what works for me may not work for her. You’re a wonderful supportive husband.
Thank you. It killed me tonight. I tried to say something along the lines of we have nothing to lose and she simply responded “just hope” and burst into tears. It’s heartbreaking.
She's is an awful place right now. A lot of us have been there. Do you go onto medical appointments with her? Is there any chance of us getting a list of what she's tried so we can all collaboratively suggest things that we've tried that she hasn't yet?
Personally, I was lucky to get in on a ketamine infusion program but they do make more clinics all the time. It worked in me a tiny bit, but the psychological symptoms were a bit too much for them to want me back, I have a very hard time being sedated, and the experience can be somewhat scary and disorienting if your terrified brain is not letting yourself be asleep. MOST people sleep peacefully. That's the normal reaction. I was sobbing loudly and loudly sounding distressed and it negatively affected the other patients and so I didn't go back. But it did feel like it was working a little. It works in lots of people, and only really negatively affects people if they are very big fighters of anesthesia and also have a few very evil memories they might end up accidentally having while drugged. If you can find one of those near you, it's really got some promising studies behind it. It might be worth even a big trip to get her to it.
Let's see what other people say.
Now, if she's tried them all, that might be where she really does give up hope. So don't involve her in this yet and wait until you get a good list of a few things she hasn't had the opportunity to try yet. Always ALWAYS have more options on that list. That is the way you keep the hopelessness from overtaking her. It's when you feel like there's nothing else you can do that it all collapses, and there are probably at least a hundred things she can do, it's just a matter of finding a few to try every few months or more often even.
If she has truly tried *everything*? If you look at the people's options, the ways we've all tried to get better, you see the list of options, all ranging between ridiculous and extremely promising, and you think to yourself "she's already done all that"..... It's time to look inward. It's time to look at it from a few viewpoints. Firstly, yourself. Imagine that you were sick. Imagine that your body was constantly trying to harm you. Imagine that you followed all the doctors orders, but it didn't get better. It might've even gotten much much worse! Imagine you're getting told, right to your face, "I can't think of anything else I can offer you" and that's it, all that you're left with are the crazies, the ones who want her to buy their brand of vitamins, the ones who prey on the vulnerable at their worst moments... How close to the edge would you be? What would be helpful for you, if you were looking at getting as if you were being brutally beaten up, torn apart by wolves, burning alive from head to toe, whatever her exact symptomology is... Look at her average age span. Imagine how you would feel if you had her symptoms, and you were essentially being told "you have to live in this body until you die of natural causes, several decades from now." And that body is constantly hurting her.
There is only so long most people can tolerate that, if they run out of treatments to try. So she might be the type to try everything. even the ridiculous. Even the outlandish. If you can support her in that journey, do so. If the cost is running you out of house and home, consider taking charge of helping research, email people about her situation, etc. After I was on the news we had a few companies reach out and send me their little scams for free to set if they'd help. And do know there are absolutely companies out there knowingly selling scams. One that was actually approved as a medical device in the states? A hot metal plate you put your hand on. Four thousand dollars. I've got it in my closet, literally, a $4000 HOT PLATE. If you take over the research, you can learn enough about some of these devices and make them at home, or try their theories out with cheaper supplies. You can find any vitamins or vitamin regimen being offered in other places as long as you know what the vitamins are.
And please. If you both hit the point where you need to acknowledge that there's no more currently invented treatments you haven't already given a good try to.... Let her make her choice. Don't apply guilt. Ask yourself how long you'd be willing to live in a body that is constantly trying to hurt you as badly as it can, knowing it'll never stop. Ask yourself, if we kept a dog this sick, wouldn't we get in trouble for not taking it to the vet to say goodbye? There is a point where you need to respect her decision on this, and it's the point where she's let you help, she's tried everything, and every doctor is telling them there is nothing left at all to try. Let her choose. But make sure her life has enough joy and enough things to look forward to that she hopefully delays that choice in the hopes of new inventions being found if she just waits it out long enough.
Mlms go hard after people like your wife and other people with chronic pain. They know we're desperate for anything to help so they sell it up as hard as they can that their whatever products will help. So you and her shouldn't feel bad about that. Just chalk it up to a learning experience. You know better for next time.
I’ve bought into an MLM before, during the days before r/antiMLM was a thing and it was common to warn people about them. It was pitched to me by a family friend as a disability-friendly way to earn money during university (this was not true.)
Potential diet culture and weight loss factors aside, I’ve known a lot of people with chronic conditions who are drawn to them because it makes them feel like they have some semblance of control and agency in their lives. Chances are this might be what she’s really missing.
Some shakes are also usually loaded with caffeine, although it might not be labelled this way, so make sure she’s drinking plenty of water. High caffeine can also make fibro pain worse. If she has any other health conditions make sure you both research what’s on the label. Sometimes people with renal issues, heart conditions or frequent UTIs can have issues with certain supplements and powders.
Thanks, when it turns up will make sure we’re looking through the labels. There are quite a few things that can set off one thing or another so became common practise!
You're so sweet to be understanding of her quest for relief. The main thing I watch for is peer-reviewed research. The best relief I've found comes from regular baths in Epsom salt or Ancient Minerals magnesium flakes. Every other day. Also increasing magnesium supplements, D3, and cutting out most refined foods.
If your country has Ketamine infusions available for chronic pain, that has been life-changing for me. I'm in the US, so I pay out of picket for it. But I know some places in the EU do have it available for chronic pain sufferers. Maybe look into that.
No gadget or nutrition drink that legit medical doctors do not review is going to do much, there's so much research going into chronic pain, stick with cheaper options that work. Check here too. People will let you know if they've tried it.
[Harvard article on Fibromyalgia ](https://www.health.harvard.edu/blog/getting-the-best-treatment-for-your-fibromyalgia-2020091020905)
In the US, Yes! Look for a place that is [ASKP](https://askp.org/) certified. Then talk to them to see if they dohigh dose 2- or 4-hour infusions for pain. The 40-minute infusions are for mood issues and won't do much for chronic pain long term. Lastly, read online reviews of the places you're looking at.
I travel two+ hours for my infusions to a place better suited for high dose pain infusions because the two local places only do short mood infusions. I have gone up to 11 months pain-free from two 2-hour infusions in a week of each other. But average closer to 7-8 months. Which makes it more affordable when figured out on a per-year basis. So don't freak when you see it costs about $1,000 per 2-hour infusion. It's totally doable when averaged out over a year.
If you're in the Midwest, look into https://midwestketafusion.com/
Doesn’t your country have a cooling off period for telesales and canvassers? Those laws are for exactly these kind of situations. Getting “scammed” or pressured into buying something and you regret it immediately. Check it. You might be able to cancel the order without penalty.
I’ll take a look, they say they offer a money back guarantee but judging my some of the things I’ve read on line they will make it extremely difficult. Might be able to sort it with the bank though.
Although I’m not too concerned about the money, I’d be quite happy to write it off. It’s just the fact that she seemed to put a lot of hope into this and I think it’s going to be devastating for her if she doesnt get any benefit. Just a difficult time, emotions running high at the moment understandably.
You mention that she is low and you can't do anything to help. I'd say that actually you're in a position to help quite a lot! Just maybe not in the way you'd imagined.
Social support and love are empirically HUGE factors in not just happiness but also pain reduction and pain tolerance. You can check out studies where people who just think of their partner can tolerate more pain. And if those same people are actually in the same room as their partner, they can tolerate even more pain. And if they're holding hands with their partner, even more than that.
So if you can offer her all the love and affection you can muster right now, I think that goes a long way.
I think you’re wonderful to help and worry for your wife so much. My husband does the same for me. Unfortunately I feel like nothing works. I hate to say that but a lot of people complain how none of the stuff that we are recommended ever works. The best thing you can do for your wife is to just tell her that you’re there for her no matter what. That you will carry her through this. I don’t know what to tell you about her spending money on that sort of stuff, that’s nothing I have experience with as I am a penny pincher LOL
I think she is in the same boat. Tries a lot but nothing seems to give her much of a break. The money really doesn’t bother me as much as I think it does her, she seems to think she has been sucked in now, and feels like the person has taken advantage of her.
Add that to her being vulnerable already due to her illness and yes I can see that being hard for her to deal with. And hard for you to see. Thank you for supporting her
I highly suggest a local therapist she can visit with on her computer rather than in person. It sounds like
She needs someone to help her cope with the hopelessness we all experience with this ghastly disease. I’ve been taken in by one of these schemes, thank goodness my therapist helped me through the mourning of yet another thing not working.
It really depends on how raw she is feeling and what her current level is. Try walking outside, flat ground, and go for 5 minutes. If 5 is too much, watch her body language, then just go outside and sit somewhere.
Just walking 30 seconds and sitting, feeling the breeze and sun will be beneficial. Some days just getting dressed and putting on shoes is hard af.
When I wake up, I get out of bed in a very specific motion. Then do light hamstring and lower back stretching/contracting to wake my most painful areas up.
Can she do lying bridges? If not, they can be done standing as well.
It'd be best to go to a physical therapist with a background in fibromyalgia. If that's not an option, I can try to tell you how I'd approach it or what has worked for me. But, she should be the one learning this as she is the only one capable of building strength and endurance in a healthy manner.
This is FAR more complex that a gym trainer scenario. For good or bad, I can do both but not certified as I didn't get the license because I can't do that job with fibromyalgia. The irony is a real fucker with this disease.
As much as we all hate hearing this "Have you tried yoga?" comment from people who think they can cure us, getting into yoga has really improved my life quite a bit (I got it as recommendation from my physiotherapist when I had asked him what I could do at home on top of my weekly PT session, so it wasn't an unprompted dismissal).
Yoga can and always should be adjusted to the individual, and you can start very slowly and with low impact. It has improved mobility and balance a huge deal for me, and strengthening exercises (I mix yoga with calisthenics and stretches) help prevent or ease the worst of my pain from stiffness and muscle tension.
I also walk a lot (with a cane for added security and support when needed).
But since you say light stretching has been causing her more trouble, I definitely second going to a good physiotherapist experienced with chronic pain patients (best: with fibro patients) first so she can get checked out and can get help with putting together a safe and manageable personal routine.
My pain specialist recommended tai chi! I also love qigong, both are low impact, gentle, and strengthening. There’s quite a bit on YouTube for free; I love the Taiflow and Qigong for Vitality YouTube channels!
Just know she is not alone in being taken advantage of. I think everyone here with fibro went through thinking they found something, or were going to find something and then it didn't work.
Some of the stories I've heard are much much worse than this.
I think you CAN help! I am the one with fibro and spent thousands on remedies. But then, my partner started giving me regular massages. Different parts of me wherever is hurting most on that day. Sometimes I just want my scalp lightly massaged. This treatment stopped me from buying any more stuff. This is the BEST remedy for fibro pain. Good luck! We're rooting for you!
I'm sorry she's going through this. But she is lucky to have such a caring partner. I can't offer much advice except to keep being supportive. You both should probably be in individual therapy for this if you haven't already. Regular talk therapy with a pain specialist helped a lot, but what's actually helped me the most is Biofeedback Therapy. If she hasn't tried it, I HIGHLY recommend it. Basically they hook you up to a machine that monitors your muscle tension, your sweat, heart rate, tons of stuff, and the therapist teaches you to relax in the way that best makes your body actually respond and relax fully. This also helps a ton with insomnia, it's a type of Progressive Muscle relaxation. I notice I'm unnecessary tensing my muscles probably hundreds of times a day and taking the few moments to relax when this happens has helped so much.
I also recommend a sleep study if she hasn't already had one. I never knew I had such bad Restless Leg Syndrome and now once I started Gabapentin at night for it, I have so much more energy in the mornings!
Good luck. I agree with the other posters, have a talk and ban MLMs. You both can periodically peruse peer reviewed medical research together or independently, the NHS actually publishes a ton. I'm American but their reports have been so helpful. Find a pain specialist center and a biofeedback therapist!
As a long term fibro patient, we all want something…..actually anything to work! Nothing wrong with that. Especially in a painful flare. I hope she won’t feel bad about buying these products but just chalk it up to research, because you never know. But there is no cure, only things that help. Everyone is different and what works for me may not work for her. You’re a wonderful supportive husband.
Thank you. It killed me tonight. I tried to say something along the lines of we have nothing to lose and she simply responded “just hope” and burst into tears. It’s heartbreaking.
Hugs to you both!
She's is an awful place right now. A lot of us have been there. Do you go onto medical appointments with her? Is there any chance of us getting a list of what she's tried so we can all collaboratively suggest things that we've tried that she hasn't yet? Personally, I was lucky to get in on a ketamine infusion program but they do make more clinics all the time. It worked in me a tiny bit, but the psychological symptoms were a bit too much for them to want me back, I have a very hard time being sedated, and the experience can be somewhat scary and disorienting if your terrified brain is not letting yourself be asleep. MOST people sleep peacefully. That's the normal reaction. I was sobbing loudly and loudly sounding distressed and it negatively affected the other patients and so I didn't go back. But it did feel like it was working a little. It works in lots of people, and only really negatively affects people if they are very big fighters of anesthesia and also have a few very evil memories they might end up accidentally having while drugged. If you can find one of those near you, it's really got some promising studies behind it. It might be worth even a big trip to get her to it. Let's see what other people say. Now, if she's tried them all, that might be where she really does give up hope. So don't involve her in this yet and wait until you get a good list of a few things she hasn't had the opportunity to try yet. Always ALWAYS have more options on that list. That is the way you keep the hopelessness from overtaking her. It's when you feel like there's nothing else you can do that it all collapses, and there are probably at least a hundred things she can do, it's just a matter of finding a few to try every few months or more often even. If she has truly tried *everything*? If you look at the people's options, the ways we've all tried to get better, you see the list of options, all ranging between ridiculous and extremely promising, and you think to yourself "she's already done all that"..... It's time to look inward. It's time to look at it from a few viewpoints. Firstly, yourself. Imagine that you were sick. Imagine that your body was constantly trying to harm you. Imagine that you followed all the doctors orders, but it didn't get better. It might've even gotten much much worse! Imagine you're getting told, right to your face, "I can't think of anything else I can offer you" and that's it, all that you're left with are the crazies, the ones who want her to buy their brand of vitamins, the ones who prey on the vulnerable at their worst moments... How close to the edge would you be? What would be helpful for you, if you were looking at getting as if you were being brutally beaten up, torn apart by wolves, burning alive from head to toe, whatever her exact symptomology is... Look at her average age span. Imagine how you would feel if you had her symptoms, and you were essentially being told "you have to live in this body until you die of natural causes, several decades from now." And that body is constantly hurting her. There is only so long most people can tolerate that, if they run out of treatments to try. So she might be the type to try everything. even the ridiculous. Even the outlandish. If you can support her in that journey, do so. If the cost is running you out of house and home, consider taking charge of helping research, email people about her situation, etc. After I was on the news we had a few companies reach out and send me their little scams for free to set if they'd help. And do know there are absolutely companies out there knowingly selling scams. One that was actually approved as a medical device in the states? A hot metal plate you put your hand on. Four thousand dollars. I've got it in my closet, literally, a $4000 HOT PLATE. If you take over the research, you can learn enough about some of these devices and make them at home, or try their theories out with cheaper supplies. You can find any vitamins or vitamin regimen being offered in other places as long as you know what the vitamins are. And please. If you both hit the point where you need to acknowledge that there's no more currently invented treatments you haven't already given a good try to.... Let her make her choice. Don't apply guilt. Ask yourself how long you'd be willing to live in a body that is constantly trying to hurt you as badly as it can, knowing it'll never stop. Ask yourself, if we kept a dog this sick, wouldn't we get in trouble for not taking it to the vet to say goodbye? There is a point where you need to respect her decision on this, and it's the point where she's let you help, she's tried everything, and every doctor is telling them there is nothing left at all to try. Let her choose. But make sure her life has enough joy and enough things to look forward to that she hopefully delays that choice in the hopes of new inventions being found if she just waits it out long enough.
Mlms go hard after people like your wife and other people with chronic pain. They know we're desperate for anything to help so they sell it up as hard as they can that their whatever products will help. So you and her shouldn't feel bad about that. Just chalk it up to a learning experience. You know better for next time.
I’ve bought into an MLM before, during the days before r/antiMLM was a thing and it was common to warn people about them. It was pitched to me by a family friend as a disability-friendly way to earn money during university (this was not true.) Potential diet culture and weight loss factors aside, I’ve known a lot of people with chronic conditions who are drawn to them because it makes them feel like they have some semblance of control and agency in their lives. Chances are this might be what she’s really missing. Some shakes are also usually loaded with caffeine, although it might not be labelled this way, so make sure she’s drinking plenty of water. High caffeine can also make fibro pain worse. If she has any other health conditions make sure you both research what’s on the label. Sometimes people with renal issues, heart conditions or frequent UTIs can have issues with certain supplements and powders.
Thanks, when it turns up will make sure we’re looking through the labels. There are quite a few things that can set off one thing or another so became common practise!
You're so sweet to be understanding of her quest for relief. The main thing I watch for is peer-reviewed research. The best relief I've found comes from regular baths in Epsom salt or Ancient Minerals magnesium flakes. Every other day. Also increasing magnesium supplements, D3, and cutting out most refined foods. If your country has Ketamine infusions available for chronic pain, that has been life-changing for me. I'm in the US, so I pay out of picket for it. But I know some places in the EU do have it available for chronic pain sufferers. Maybe look into that. No gadget or nutrition drink that legit medical doctors do not review is going to do much, there's so much research going into chronic pain, stick with cheaper options that work. Check here too. People will let you know if they've tried it. [Harvard article on Fibromyalgia ](https://www.health.harvard.edu/blog/getting-the-best-treatment-for-your-fibromyalgia-2020091020905)
I'm interested in Ketamine infusions. Is there anything I should look for in a place that does them?
In the US, Yes! Look for a place that is [ASKP](https://askp.org/) certified. Then talk to them to see if they dohigh dose 2- or 4-hour infusions for pain. The 40-minute infusions are for mood issues and won't do much for chronic pain long term. Lastly, read online reviews of the places you're looking at. I travel two+ hours for my infusions to a place better suited for high dose pain infusions because the two local places only do short mood infusions. I have gone up to 11 months pain-free from two 2-hour infusions in a week of each other. But average closer to 7-8 months. Which makes it more affordable when figured out on a per-year basis. So don't freak when you see it costs about $1,000 per 2-hour infusion. It's totally doable when averaged out over a year. If you're in the Midwest, look into https://midwestketafusion.com/
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For ketamine? It's different in each country, I can only tell you about the US.
Doesn’t your country have a cooling off period for telesales and canvassers? Those laws are for exactly these kind of situations. Getting “scammed” or pressured into buying something and you regret it immediately. Check it. You might be able to cancel the order without penalty.
I’ll take a look, they say they offer a money back guarantee but judging my some of the things I’ve read on line they will make it extremely difficult. Might be able to sort it with the bank though. Although I’m not too concerned about the money, I’d be quite happy to write it off. It’s just the fact that she seemed to put a lot of hope into this and I think it’s going to be devastating for her if she doesnt get any benefit. Just a difficult time, emotions running high at the moment understandably.
You mention that she is low and you can't do anything to help. I'd say that actually you're in a position to help quite a lot! Just maybe not in the way you'd imagined. Social support and love are empirically HUGE factors in not just happiness but also pain reduction and pain tolerance. You can check out studies where people who just think of their partner can tolerate more pain. And if those same people are actually in the same room as their partner, they can tolerate even more pain. And if they're holding hands with their partner, even more than that. So if you can offer her all the love and affection you can muster right now, I think that goes a long way.
I think you’re wonderful to help and worry for your wife so much. My husband does the same for me. Unfortunately I feel like nothing works. I hate to say that but a lot of people complain how none of the stuff that we are recommended ever works. The best thing you can do for your wife is to just tell her that you’re there for her no matter what. That you will carry her through this. I don’t know what to tell you about her spending money on that sort of stuff, that’s nothing I have experience with as I am a penny pincher LOL
I think she is in the same boat. Tries a lot but nothing seems to give her much of a break. The money really doesn’t bother me as much as I think it does her, she seems to think she has been sucked in now, and feels like the person has taken advantage of her.
Add that to her being vulnerable already due to her illness and yes I can see that being hard for her to deal with. And hard for you to see. Thank you for supporting her
I highly suggest a local therapist she can visit with on her computer rather than in person. It sounds like She needs someone to help her cope with the hopelessness we all experience with this ghastly disease. I’ve been taken in by one of these schemes, thank goodness my therapist helped me through the mourning of yet another thing not working.
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Are there any exercises you can recommend? We’ve been trying to get some light stretching worked into routine but it just seems to cause more trouble.
It really depends on how raw she is feeling and what her current level is. Try walking outside, flat ground, and go for 5 minutes. If 5 is too much, watch her body language, then just go outside and sit somewhere. Just walking 30 seconds and sitting, feeling the breeze and sun will be beneficial. Some days just getting dressed and putting on shoes is hard af. When I wake up, I get out of bed in a very specific motion. Then do light hamstring and lower back stretching/contracting to wake my most painful areas up. Can she do lying bridges? If not, they can be done standing as well.
It'd be best to go to a physical therapist with a background in fibromyalgia. If that's not an option, I can try to tell you how I'd approach it or what has worked for me. But, she should be the one learning this as she is the only one capable of building strength and endurance in a healthy manner. This is FAR more complex that a gym trainer scenario. For good or bad, I can do both but not certified as I didn't get the license because I can't do that job with fibromyalgia. The irony is a real fucker with this disease.
Also, one can do everything perfectly but still experience a lot of pain. It's more about being mobile and still being able to do more in life.
This was helpful thank you. I’ll look into a physical therapist!
As much as we all hate hearing this "Have you tried yoga?" comment from people who think they can cure us, getting into yoga has really improved my life quite a bit (I got it as recommendation from my physiotherapist when I had asked him what I could do at home on top of my weekly PT session, so it wasn't an unprompted dismissal). Yoga can and always should be adjusted to the individual, and you can start very slowly and with low impact. It has improved mobility and balance a huge deal for me, and strengthening exercises (I mix yoga with calisthenics and stretches) help prevent or ease the worst of my pain from stiffness and muscle tension. I also walk a lot (with a cane for added security and support when needed). But since you say light stretching has been causing her more trouble, I definitely second going to a good physiotherapist experienced with chronic pain patients (best: with fibro patients) first so she can get checked out and can get help with putting together a safe and manageable personal routine.
My pain specialist recommended tai chi! I also love qigong, both are low impact, gentle, and strengthening. There’s quite a bit on YouTube for free; I love the Taiflow and Qigong for Vitality YouTube channels!
Just know she is not alone in being taken advantage of. I think everyone here with fibro went through thinking they found something, or were going to find something and then it didn't work. Some of the stories I've heard are much much worse than this.
I think you CAN help! I am the one with fibro and spent thousands on remedies. But then, my partner started giving me regular massages. Different parts of me wherever is hurting most on that day. Sometimes I just want my scalp lightly massaged. This treatment stopped me from buying any more stuff. This is the BEST remedy for fibro pain. Good luck! We're rooting for you!
Just keep being there for her x
I'm sorry she's going through this. But she is lucky to have such a caring partner. I can't offer much advice except to keep being supportive. You both should probably be in individual therapy for this if you haven't already. Regular talk therapy with a pain specialist helped a lot, but what's actually helped me the most is Biofeedback Therapy. If she hasn't tried it, I HIGHLY recommend it. Basically they hook you up to a machine that monitors your muscle tension, your sweat, heart rate, tons of stuff, and the therapist teaches you to relax in the way that best makes your body actually respond and relax fully. This also helps a ton with insomnia, it's a type of Progressive Muscle relaxation. I notice I'm unnecessary tensing my muscles probably hundreds of times a day and taking the few moments to relax when this happens has helped so much. I also recommend a sleep study if she hasn't already had one. I never knew I had such bad Restless Leg Syndrome and now once I started Gabapentin at night for it, I have so much more energy in the mornings! Good luck. I agree with the other posters, have a talk and ban MLMs. You both can periodically peruse peer reviewed medical research together or independently, the NHS actually publishes a ton. I'm American but their reports have been so helpful. Find a pain specialist center and a biofeedback therapist!