I was diagnosed in July 2012 so I have tried out of desperation some unconventional ways to deal with the pain and other symptoms of Fibro. The things you do when your desperate and don't want to accept there is "no cure"! Please tell me I'm not the only one who got sucked into these supposed methods to heal Fibro. Last year my mom told me about this guy who has healed people of all kinds of illnesses. She heard of him from the Priest at the hospital she volunteers for. Anyway I tried it and ended up in more pain than before and he convinced me I could go off my meds (which I did) because when I left there I would be cured and all I would need to take was Aleve. This guy apparently could see right through you where he sees your organs and if or what disease you have and said I did not have Fibro and my spine just needed alignment. The next thing I tried was this syrup which was suppose to help with Fibro and arthritis. Of course it did not work either! Now my mom is suggesting Vibro-acoustic Harp Therapy. Has anyone heard of it? It is suppose to relieve pain through vibrations created by a harp. Now I did go to the website to read how this works. It's not that I don't want to keep an open mind that maybe something might work, however I don't have money to waste and told my mom I appreciated the info, but did not think I was willing to put the money out on this. I did try acupuncture last year and $700. down the tubes. Massages as well which I must say feels good in the moment, but on arriving at home the pain is still there. The same was true with the acupuncture. My question is have any of you tried different things? Besides these methods relieving some symptoms, do you believe there is anything in any of your experiences through the year's that you or you heard of someone else being cured from Fibro? I do appreciate that my mom and other's come to me with these suggestions, but how do I explain to them that there is no cure! I think my mom thinks I'm not trying my best to be cured and wants me to try different things to get off the pain meds. I would appreciate your input. I am also sorry that this is so long. I look forward to your responses!
I think that it is ok to try some different methods but I would do your research first. Having someone who is not a doctor tell you to just go off your meds is not ok! Going off meds and not tapering can be very dangerous. There is no quick fix or a cure for fibro only things that can alleviate your symptoms for a short time so anything that makes this claim stay far far away from. Things like going all natural, or gluten free, vegetarian exercise, vitamin, these are the things that help us. Not a voodoo witch doctor!! Next time your mom makes a suggestion I would just thank her and say you will look into it. If you do your research and you think it will help then make your decision.
I learned to explain to people that Depression (I have that too) and Fibro are illnesses like Cancer and Diabetes. I would ask "would you recommend a diabetic going off their meds?" "Would you tell a cancer patient it is all in their head?" This is a real medical condition.
For years I refused to take medication because I thought it was a racket and that the drug companies just wanted money (which is true) but depression is a devastating illness. When I was pregnant with my 3rd child I turned almost into a vegetable. How much was Fibro and how much was depression at that point I don't know. I went to a counselor who told me I was functioning at about 60%. I realized then that I couldn't just fix this with prayer and wishes. God allows us to go through things for a purpose. I asked and God said NO. I went on the medication and have been healing ever since.
There is no quick fix. Unfortunately the best relief I have found is like Squeakers says, try to cut the crud out of your diet, learn how to exercise and stretch, find people who understand you for support. My energy has improved since eating better. I can't even eat out much anymore because the food is just ... icky. lol. Maybe a sit down restaurant but i can not even stomach fast food anymore! We don't even eat "packaged" foods that much. I try to do from scratch. I just made chicken nuggets last night. YUMMM I don't make my own tomato sauce or anything yet, but someday.
I also wanted to say I am cutting out as many chemicals as I can. I have gone to as little as possible. I clean with soap and bleach. (not nice but better than some of that stuff) I taught preschool for 20 years and bleach is the best germ killer out there. 1 part per 10. Nothing cleans glass and mirrors better than plain water. I make a less chemicalized laundry soap. all of this has no noticeable effect on curing anything, but it is healthier. and it is considerably CHEAPER. I know it is healthier for my kids too. and most of it works just as well or better than the expensive stuff. I figure what if years of chemicals have taken their toll? I figure if I can get healthier other ways then the Fibro pain and fatigue may be easier to deal with.
This made me chuckle because my mum is exactly the same. She is trying to get me to use an alternative therapist who treats people in pain. She is both expensive and does not believe in this condition, so why does she help fibro patients? because its all manageable through positive thinking:/ I do try to help my mum understand this but denial is a wonderful place to be sometimes. I hope we all find our magic treatment but until then it’s good to relate on here xx
Yes, until then thank God we are among our people! lol Your right about it being expensive. You could run from pillar to post searching for that magic treatment and go broke in the meantime! I love my mom and she certainly know's my financial situation as well as I'm not working and have applied for disability. It's just that she hates so much that I'm on pain meds and I guess she thinks there are other ways to manage my pain. Last year she actually thought positive thinking would do it! Thank's for your response...do you mind if I add you as a friend?
Thank you for your response...I agree with the research and a lot of what you both said. Last year I was in debilitating pain and not yet started on pain meds. I was on Lyrica and anti-depressants and like most of us here in depression. I indeed had the good sense to ween myself off the Lyrica. I was so desperate I was willing at that time to try anything. He suggested I could off the meds as he believed so much in his treatment that I would be cured! I made the choice to as I too wanted to believe! Crazy but true! However, sometimes when we are in that state of mind we don't always think clearly. I was just wanting to know how you handle family and friends who have good intentions and wanted to know how some of you would handle that. Thank you both again for your thoughts...Best wishes!
I've never heard of anyone being cured of fibro except those who want to make money off of us with their "cures." No cures for fibro.
Maybe it would help if you printed up some of our discussions here so she could see that we are all in pain too, in the same boat as you are, and no, we aren't cured. We aren't running around doing this and that because we can't. We're chronically ill with a lifetime illness. I know your mom means well but you are chronically ill with a lifetime illness. I likened mine to Lupus or MS to my mom, telling her that it affects my entire body forever I think she's finally starting to get it, I'm not the same person I was before and probably never will be her again.
I hate to say it but the Vibrating Harp Theory sounds pretty iffy to me. I mean, why would vibrations help an illness that seems to affect our central nervous system and our brain? And $700 for the honor? Just go to your local symphony and get a seat nearest the harp player!
My less conventional methods included using a chiropractor (did absolutely nothing for me except take $35 out of my pocket for every session,) and deep tissue massage, (which felt great but as soon as I did something extremely physical on my job, which happened every day, btw,) the benefit from the massage went out the window. Physical therapy was another extreme method, in my mind, because I always ended up in far worse pain and some of it never went away again. I've also done radio ablation to the nerves in my back, and it has helped. Temporarily, for about 8 months. Better than nothing, I guess.
This is a good discussion, as many of us have used some far out methods in order to get relief. It's nice to see what worked for whom and what didn't help.
Hugs to you,
Petunia
PS: I do think that positive thinking helps me to distract myself easier so I don't think about the fibro as much. But I only get the positive thinking when the antidepressants are working properly. When the pain is too great, all thoughts of being positive, heck, of being anything at all, go out the window.
This would make a great thread of its own. You could tell us more about your safer products that you make. For instance, I'd love to know your formula for the laundry soap. And you figure that your methods are what housewives probably used 70 or so years ago. I do think using less chemicals is a great idea. Ever since reading that the weed killer Round Up is suspected of causing lupus, some autism, some forms of cancer, etc., I've been thinking that maybe a common chemical did give us fibro.
You know, it's hard for those who love and care about us to take 'no cure' for an answer! I think at one time or another we have done similar things that you describe, and it just ends up verifying that the meds we take really do help us.
Never heard of the harp healing, I use to be very open to all of this kind of stuff. Not so much anymore, it's tough to match the heavy duty meds I take.
I've done the acupuncture, therapeutic massage, sonic waves, Pain management injections, all used trying to break pain cycles, in the end, it just made me 'untouchable.' I just won't do invasive anymore. The chiropractic adjustments help, and he only uses heat on me, I just say no to the rest of it!
I understand her concern about pain meds, I have had my own reservations about them for years. My GP has tried to get me to use then as a maintence drug, I have fought it for years, but I am needing them more like the way he intended them. He knew it all along, I had to come to the realization.
Thank others for their suggestion, but do what you have to do. Be as well as you possibly can, just hug your Mom and thank her for caring!
I definitely have tried everything under the sun as well hoping that the fibro could be cured, and i still hold back a big sigh when my mom comes to me with a new idea of treatment as well. Family and friends mean well, but they have no idea what having fibromyalgia is like and sometimes (at least for me) just get frustrated when they can’t fix it.
I think you need to do what’s best for you.
Thank you so much for all of your responses! I feel so validated!! I think all of what each of you said brought great possible ways to answer my mom and whoever will in the future suggest ways that I might cure Fibro and/or ways to no longer take my medication. Obviously, like most of you I would prefer that there was a more natural way to manage the pain. As I have read many members stories here and the fact that many of you have doctors that won't even prescribe pain meds and your living in extreme pain constantly breaks my heart and I think inhuman! I will absolutely do what I have to to have some quality of life! I'm just so glad to hear also that many of you have also tried different things over the year's which haven't worked. This is something I will definitely use in my next conversation with my mom should the topic come up again. I love my mom and I know she means well and your right SK about our families accepting "no cure" for an answer. I'm sure if I had cancer these suggestions wouldn't even arise...how could you possibly think that harp vibrations could relieve or cure cancer. Well it is the same for Fibro! They just can't seem to understand it is the same thing.
Petunia I had to laugh I mean really was laughing when you wrote "I hate to say it but the Vibrating Harp Theory sounds pretty iffy to me. I mean, why would vibrations help an illness that seems to affect our central nervous system and our brain? And $700 for the honor? Just go to your local symphony and get a seat nearest the harp player!" touché! LOL
At this point she should be happy that in the short time since my diagnosis I did try other ways and some only brought temporary relief and money spent which I do not have to put out! I've got bigger things to worry about like how I'm going to pay my rent and will the government give me disability. Even with that it will not be enough to make ends meet so I will have to find myself a part-time job to have enough to make ends meet. I'm so afraid for the future and want to spend my money wisely. I try very hard to maintain a positive attitude, but at times I am challenged with this. Again, thank you all so much for the great support, advice and your thoughts!
I empathize with you! My mother just told me today on our way to her OT apt, that I should try that pain clinic that they advertise on TV she said they are supposed to get rid of the pain! I told her, that I did see the advertisement, but before I would consider doing that, I would check it out with my RA dr. Mom means, well she just doesn't quite understand.
It's like SK said " it's hard for those who love and care about us to take 'no cure' for an answer". They do mean well, but just don't understand the depth of what Fibro is. My doctor told me from the beginning that I would feel relief with the pain medication, but it doesn't take away all of the pain. In order to do that I would be so drugged up and not functional and/or die from a heart attack!
Hi DreamCatcher. Your Mom is very entertaining in her ideas! It's hard to see it that way when you're sitting next to her and she is serious. She means well. We all have family members that we chuckle at when their backs are turned!
The most alternative I have gotten is an acupuncturist who does the whole Chinese Medicine thing. Needling, oils, massage, adjustment, heat and herbs. I love her and her practice. Her relief lasts about 2 days. If insurance would cover her I would go twice a week and stop all my meds. That is how much I like her. BUT, I will not be stopping any of my meds any time soon.
Until a real medical reason and cure arrive on the scene, we better just stick with each other and with the standard medical, vitamin, diet and herb regimen that we know HELP us. Even though they dont CURE us.