Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
Fibromyalgia is poorly understood. I had it once and this woman is not exaggerating. The only way to remain pain free is to stay perfectly still because if you use your muscles, you'll pay for it later.
I think it has something to do with amino acids/malabsorption of protein. I cured mine by taking an amino acid but I just got lucky. My fibro dr recommended 20 minutes of aerobic exercise every single day. He was a specialist. The best way for me to get the exercise was in a heated PT swimming pool. It did cure the fibro but years later I got it back again.
Probably this woman doesn't have daily access to PT but if she did, the 20 minute easy aerobic routine does work and that's what was recommended by a Boston specialist.
While I had the fibro, it was extremely limiting as far as what I could do. I can understand why this woman can't even go for her lunch. If she could get easy PT EVERY SINGLE DAY, she might get rid of it entirely though. Simple stretching, moving, even doing the exercises lying down. It only took me a few weeks before it worked.
Otherwise, all I can think of is Arnica gel. It comes in a tube and if I have muscle pain, I rub some in. I feel sorry for this woman because she is being misunderstood and she is suffering so much. Fibro is NOT depression or anything like that. As I said, I think it has something to do with amino acids but you won't find a dr who has figured out that angle. I wish her good luck.
Hi in new england, again.. Thankyou. I think I can pursuade her to take the amino acid. I will have to check any conflict with her prescription meds. Her doctor ignores her phone calls, her pharmacy's phone calls, and does not monitor my friend at all. It is shameful big time. Her family are all sick with one thing or another and my friend does not want to bother them. She needs a better doctor. I am not going to let my friend fade into nothing if I can help it.
Thanks friend,
Kitty61
Fibromyalgia is poorly understood. I had it once and this woman is not exaggerating. The only way to remain pain free is to stay perfectly still because if you use your muscles, you'll pay for it later.
I think it has something to do with amino acids/malabsorption of protein. I cured mine by taking an amino acid but I just got lucky. My fibro dr recommended 20 minutes of aerobic exercise every single day. He was a specialist. The best way for me to get the exercise was in a heated PT swimming pool. It did cure the fibro but years later I got it back again.
Probably this woman doesn't have daily access to PT but if she did, the 20 minute easy aerobic routine does work and that's what was recommended by a Boston specialist.
While I had the fibro, it was extremely limiting as far as what I could do. I can understand why this woman can't even go for her lunch. If she could get easy PT EVERY SINGLE DAY, she might get rid of it entirely though. Simple stretching, moving, even doing the exercises lying down. It only took me a few weeks before it worked.
Otherwise, all I can think of is Arnica gel. It comes in a tube and if I have muscle pain, I rub some in. I feel sorry for this woman because she is being misunderstood and she is suffering so much. Fibro is NOT depression or anything like that. As I said, I think it has something to do with amino acids but you won't find a dr who has figured out that angle. I wish her good luck.
Hi in new england, again.. Thankyou. I think I can pursuade her to take the amino acid. I will have to check any conflict with her prescription meds. Her doctor ignores her phone calls, her pharmacy's phone calls, and does not monitor my friend at all. It is shameful big time. Her family are all sick with one thing or another and my friend does not want to bother them. She needs a better doctor. I am not going to let my friend fade into nothing if I can help it.
Thanks friend,
Kitty61
As for the amino acids, it's different for everyone and no medical people have really paid enough attention to figure it out. Therefore, I wouldn't suggest taking an amino acid. I took one accidentally--took it after reading a sleep study about it and by co-incidence, it happened to be the right one for my fibro. She could take the wrong amino acid and do damage. Please don't start her on any amino acids.
Sounds like she needs a better doctor, yes. Probably something to take for pain and if possible some physical therapy. As I said, the fibro specialist in Boston recommended gentle aerobic exercise every day. That can CURE it. Aerobic exercise is very gentle, can be done lying on the floor or in a heated pool. Trick is every single day without fail for a few weeks.
If it’s too painful or you’re too tired to exercise, you can begin with walking, moving in a swimming pool, or other gentle activities. If you do this regularly, you can build your strength and endurance over time.
...showed that exercise in a pool was better than gym-based aerobic exercise or home-based stretching and strengthening exercise in relieving fibromyalgia symptoms.
If you can get a physical therapist who will suggest some easy exercises to do in a heated pool, that would be great. I used to go to the pool three days a week and the days I didn't go, they drew up some gentle exercises for me to do at home. Have to do them every day for 15-20 minutes. Don't do anything strenuous, just gentle exercise, stretches, bending down, twisting, lying down moving arms up and down, and just keep on moving for that amount of time.
Amino acid deficiencies and other nutritional deficiencies should be looked into. The article I linked says that, according to NIH, a vitamin D deficiency may also be linked to fibro.
A nutritionally-rich diet is very important to manage, improve or reverse chronic illnesses. It should be the first thing to analyze and change...or use essential nutrient supplements if necessary. And avoid trigger foods/drinks.
My friend is 85 years old, sooooo tiny and frail, uses a walker, walks crooked, poor hearing, easily fatigued. If you saw her you would see that she would not be capable of going into a pool or even travelling to get to a public pool. Moving her body causes so much pain she avoids using her body at all. Now even going to the dining room for meals creates extra pain. Changing her diet will be a hugedeal. Although I think it would be a good idea, there are barriers.We are served meals that are made based on the food pyramid and there are no adjusted diets offered here.
Since she has no help from her physician she will have no help designing an elimination diet. I have my own disability and can only help her when I am feeling well enough. I have had to help her to get in touch with her health case manager once before. She calls them and leaves a message and she does not get a return call. It happens like this repeatedly.
After considering all of your valid suggestions, I think I should contact the seniors's advocacy group offered by our gov. and from that I hope we can get her the help she needs navigating all of the options you all have proposed.
I also have fibromyalgia. Getting a diagnosis was very difficult as I have unrelated issues which masquerade as lupus or another autoimmune disorder. I have repeatedly tested negative for all relevant known autoimmune disorders. Breaking all of the various components into small pieces was what enabled my rheumatologist to finally conclude that I have bits and pieces of some autoimmune problem, as yet unnamed, AND fibromyalgia as well. It took a real detective to sort it all out. I'm hoping that your friend has seen a rheumatologist? And maybe a geriatrician? Maybe a change of physician is in order?
As far as what has helped with the fibro . . . physical therapy with mild gentle exercises as mentioned above in addition to a walking program which I stick with as much as possible, weather permitting. I'll get up in the morning barely able to move but once I get in gear, my body parts improve.
The other big thing which has helped is Vitamin D. I was tested and found to be exceedingly low. Since I began taking Vitamin D my fibro symptoms have lessened to a great degree. Has your friend been tested for a Vitamin D deficiency?
I realize that your friend has such restrictions on her activities that doing much in the way of exercise is probably not going to happen. But even stretching while sitting or lying down can work wonders. Many of my exercises are done prone and most of the others could be done from a sitting position if need be. I have osteoporosis, scoliosis, and kyphosis along with everything else so my exercises are very specific and do not aggravate any of my bone and spinal problems. So the exercises must be prescribed by a professional experienced with the issues of someone like your friend. not by random exercises found via Dr. Google.
I think your thought of contacting your Area Agency on Aging or similar organization is a good place to start. Best of luck . . . your friend is lucky to have you looking out for her.
I also have fibromyalgia. Getting a diagnosis was very difficult as I have unrelated issues which masquerade as lupus or another autoimmune disorder. I have repeatedly tested negative for all relevant known autoimmune disorders. Breaking all of the various components into small pieces was what enabled my rheumatologist to finally conclude that I have bits and pieces of some autoimmune problem, as yet unnamed, AND fibromyalgia as well. It took a real detective to sort it all out. I'm hoping that your friend has seen a rheumatologist? And maybe a geriatrician? Maybe a change of physician is in order?
As far as what has helped with the fibro . . . physical therapy with mild gentle exercises as mentioned above in addition to a walking program which I stick with as much as possible, weather permitting. I'll get up in the morning barely able to move but once I get in gear, my body parts improve.
The other big thing which has helped is Vitamin D. I was tested and found to be exceedingly low. Since I began taking Vitamin D my fibro symptoms have lessened to a great degree. Has your friend been tested for a Vitamin D deficiency?
I realize that your friend has such restrictions on her activities that doing much in the way of exercise is probably not going to happen. But even stretching while sitting or lying down can work wonders. Many of my exercises are done prone and most of the others could be done from a sitting position if need be. I have osteoporosis, scoliosis, and kyphosis along with everything else so my exercises are very specific and do not aggravate any of my bone and spinal problems. So the exercises must be prescribed by a professional experienced with the issues of someone like your friend. not by random exercises found via Dr. Google.
I think your thought of contacting your Area Agency on Aging or similar organization is a good place to start. Best of luck . . . your friend is lucky to have you looking out for her.
Thanks for your well wishes.
I am thankful a person that has this same disease has replied. Everyone else had very good suggestions too.
Thanks for saying I am a good friend. It warmed my heart. She does depend upon me for emotional support and luckily I can see into her eyes and see the the fun loving person she really is but too much pain and being ignored has tainted that. I think she is feeling the effects of the realization that people like her become invisible for the most part. That is hard for anybody to accept and the older I get the more I notice it for myself.
She takes Vit D supplements.
I have thought of getting her to see a rheumotologist.
It is part of the plan I am slowing compiling for her to review and hopefully consent to doing. Before I do a whole bunch more of searching around I thought I would contact the Advocate group and find out what kind of assistance they provide as part of their services.
Did your vision all of a sudden get really bad? I have heard it happens to fibro patients. My friend is going through eye injections once a month, in both eyes. Her vision is very poor. I think she said macular degeneration? I go to the same clinic for eye injections so I know what she is going through with the eyes.
I checked out symptoms of other similar ailments looking to see if there are treatments for these other diseases.
I am thankful a person that has this same disease has replied. Everyone else had very good suggestions too.
Thanks for saying I am a good friend. It warmed my heart. She does depend upon me for emotional support and luckily I can see into her eyes and see the the fun loving person she really is but too much pain and being ignored has tainted that. I think she is feeling the effects of the realization that people like her become invisible for the most part. That is hard for anybody to accept and the older I get the more I notice it for myself.
She takes Vit D supplements.
I have thought of getting her to see a rheumotologist.
It is part of the plan I am slowing compiling for her to review and hopefully consent to doing. Before I do a whole bunch more of searching around I thought I would contact the Advocate group and find out what kind of assistance they provide as part of their services.
Did your vision all of a sudden get really bad? I have heard it happens to fibro patients. My friend is going through eye injections once a month, in both eyes. Her vision is very poor. I think she said macular degeneration? I go to the same clinic for eye injections so I know what she is going through with the eyes.
I checked out symptoms of other similar ailments looking to see if there are treatments for these other diseases.
Yes, the rheumatologist is the way to go. Fibromyalgia is part of their specialty.
There are some primary doctors who have a dim view of Fibro as its symptoms are so vague and could be so many other things. A Fibro diagnosis is a diagnosis of exclusion - when nothing else fits and all other possibilities have been eliminated, Fibro might be diagnosed. Fibro is difficult to diagnose because there are no definitive tests to "prove" it, such as bloodwork, MRI's, etc. There are, however, "tender points" at specific locations on one's body. The day the rheumy touched those specific spots with his trained hands, I nearly flew off the table. He knew exactly where and how to touch, of course, and each location was excruciatingly painful. I'd attempted to palpate them myself (from charts on the internet!) and hadn't had any result. Obviously I was in the wrong place!
I don't have any eye involvement, thankfully. I have a couple of friends who have macular degeneration and are having the shots - I really feel for you. It sounds very unpleasant, to say the least.
I find that staying warm helps - if I get chilled, that can set me off. So do barometric pressure changes. I use those heat pads that go in the microwave and they really help. For some people, though, ice packs helps. Such an individual thing.
Amino acid deficiencies and other nutritional deficiencies should be looked into. The article I linked says that, according to NIH, a vitamin D deficiency may also be linked to fibro.
A nutritionally-rich diet is very important to manage, improve or reverse chronic illnesses. It should be the first thing to analyze and change...or use essential nutrient supplements if necessary. And avoid trigger foods/drinks.
You and I are on the same page. I think fibro is probably something to do with amino acids. Maybe other deficiencies too but I know that for me, at least, it's amino acids. I take vitamin D so it's not that. Diet is very important and correcting any deficiencies too.
The trigger foods are what I usually refer to as the food allergies. I never even knew I had food allergies--I thought those were things other people had but not me! Food allergies can make you tired and weak.
Maybe at this woman's age and in her frail condition about all that can be hoped for is pain medication and an improved diet. I don't think doctors do much for amino acid deficiencies and anyway, I had mine tested and they were fine. So it must be that some of us cannot convert the amino acids into the needed proteins. But can doctors figure that out?
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
