Changing Pain

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CJSkippy

Member
Joined
Jan 20, 2020
Messages
25
Reason
DX FIBRO
Diagnosis
11/2001
Country
US
State
CA
Hello. I am new on this site. I was diagnosed in 2001. I have done pretty well since I got off all the drugs making me feel so dopey. But now I find myself with new pain. Does this happen to anyone?

1. Cramps in toes, shins, thighs, etc., several times a night for weeks, then just goes away.

2. Pain in abdomen under the skin with simple movement, several times a week. It feels like bursitis. Like the tissue under the skin is inflamed or something. Hard to explain. Kind of like a cramp, without it being a cramp. Then stoped happening suddenly. I am actually getting a CT on Thursday, but I expect a negative results.

There have been many other things over the years. 3. Spasm in my upper right arm. 4. Spasms in my legs when I straighten them upon awakening. That has not happened in recent years.

Anyway, just wondering if anyone else has these crazy symptoms that come and go or stop all together?

Have you found your "Fibro symptoms increase with age? I am 70.
 
Yes, yes, and yes,I have so many different symptoms at different times it gets really difficult to pinpoint the worst ones when talking with the doctor at every appointment. I'm 69 and at first thought it was simply arthritis all over my body but tests proved that wrong. I believe I've had FM many years but just recently diagnosed as tests show nothing else causing these crazy symptoms. I'm taking tramadol and Lyrica after experimenting with other meds that deemed worthless. These meds seem to help although don't take away all pains but now I worry everytime I need a refill I'll be denied because of the opiod controversy. This is a miserable way to live out these "golden years", don't you agree?
 
Hi Littlee68. Thank-you for responding. I do agree! The Golden Years could be better.

Like you, I searched for a long time to find a diagnosis. Finally got lucky, in 2001. Had to retire early.

I have always had pain, since early 50's. There is not a moment I am pain free. Yet I live my life. I had horses until a few years ago. I walk and love to take road trips and even traveled overseas, but I always have some pain.

For a long time I took medications for it. I too was afraid some doctor would decide not to renew. I understand the fear. Then I got tired of all the meds and went off them of my own accord, quit going to doctors and just lived with it. However, living with it, while never easy, is getting tougher. So I guess it is time I get a good Fibro doc and get back on meds. I cannot keep living this way.

I also have type two diabetes that was easily controlled with diet, but it has progressed too and I take Metformin for that. I have lost weight and kept it off for several years, but have more to lose (about 25 pounds). I know that will help.

It seems that people with Fibro always have other illness/disease. I also have sleep apnea, arthritis, some swallowing disfunction, IBS (though it does not bother me much-so I am questioning that) an auto-immune related big rash over my torso, carpal tunnel syndrome, and I cannot think what else right now.

Makes me think I am a little crazy. So glad to know there are others. Hope I hear from you again. :)
 
Actually I've had Fibro since my early 40's. I am 65 now. I used to have the same pain for years mostly affecting my left side and IBS. which I've learned to manage. Funny thing though when I hit menopause in my early 50's, that was my best decade! I started running and exercising and was good for years. Then in my 60's it came back and now is all over where it never was before. Never had pain below my waist and now I do and it can come and go immediately and it's pretty much all over, but I do contribute most of it since I took a desk job from an active job a few years ago.
Hello. I am new on this site. I was diagnosed in 2001. I have done pretty well since I got off all the drugs making me feel so dopey. But now I find myself with new pain. Does this happen to anyone?

1. Cramps in toes, shins, thighs, etc., several times a night for weeks, then just goes away.

2. Pain in abdomen under the skin with simple movement, several times a week. It feels like bursitis. Like the tissue under the skin is inflamed or something. Hard to explain. Kind of like a cramp, without it being a cramp. Then stoped happening suddenly. I am actually getting a CT on Thursday, but I expect a negative results.

There have been many other things over the years. 3. Spasm in my upper right arm. 4. Spasms in my legs when I straighten them upon awakening. That has not happened in recent years.

Anyway, just wondering if anyone else has these crazy symptoms that come and go or stop all together?

Have you found your "Fibro symptoms increase with age? I am 70.
y
 
hi again,
The little I've researched this condition (I refuse to cal it a disease) I find former overly active people seem to be the ones with FM. I'm sure that can be proven wrong but I was also very physically active and independent . Now I'm finding it very disturbing to needing the help. Some can accept the inability to stay active graciously and perhaps someday I will too, but taking meds makes me feel somewhat normal right now. I've tried going off them too, because it's such a hassle these days to get prescribed without feeling like a criminal. I hope you all can find that one great FM doctor. When I went in with all my complaints I imagined mine would give me the line "you're just getting older" but to my surprise she was understanding and thorough. I am so thankful to her AND all of you for the understanding and support. Hope you have a wonderful day!
 
I was very active as well, except when I was overmedicated after my diagnosis. I just need the right balance of meds and am ready to go on them again. I was very lucky to get diagnosed as well. I remember telling one doctor about my symptoms and she asked if I had been abused as a child! And when I researched and thought maybe I had the disease, my doctor (different one) said, "that is a wastebasket diagnosis." Another told me he didn't believe in it or treat it, even though it was in the Diagnostic Manual by then that all doctors use. Finally, a sports doctor of all people, diagnosed me. What I relief! It is so humiliating to have to crawl on our bellies like a stray dog to ask for help, then be kicked in the ribs.

I know what you mean about feeling like a criminal when you go in for meds. I have had nurses and doctors all but shake their heads at all the meds I was on. But they have no idea what this disease is like. It is terrifying to me to think of going into a nursing home someday and not being taken seriously regarding my pain.

Got my CT scan today, but I expect it to be negative, which is good, but it will not show what is causing my pain. Perhaps an MRI, but I have an Interested device in that helps me with urinary frequency and urgency, and I cannot have MRI's. I have been thinking of having it taken out though.

Well, guess that is a lot. Great to have a place to come to, to be understood and informed. :)
 
I was very active as well, except when I was overmedicated after my diagnosis. I just need the right balance of meds and am ready to go on them again. I was very lucky to get diagnosed as well. I remember telling one doctor about my symptoms and she asked if I had been abused as a child! And when I researched and thought maybe I had the disease, my doctor (different one) said, "that is a wastebasket diagnosis." Another told me he didn't believe in it or treat it, even though it was in the Diagnostic Manual by then that all doctors use. Finally, a sports doctor of all people, diagnosed me. What I relief! It is so humiliating to have to crawl on our bellies like a stray dog to ask for help, then be kicked in the ribs.

I know what you mean about feeling like a criminal when you go in for meds. I have had nurses and doctors all but shake their heads at all the meds I was on. But they have no idea what this disease is like. It is terrifying to me to think of going into a nursing home someday and not being taken seriously regarding my pain.

Got my CT scan today, but I expect it to be negative, which is good, but it will not show what is causing my pain. Perhaps an MRI, but I have an Interested device in that helps me with urinary frequency and urgency, and I cannot have MRI's. I have been thinking of having it taken out though.

Well, guess that is a lot. Great to have a place to come to, to be understood and informed. :)

I also was very active all my life. And I have had the greatly humiliating experiences of being ignored, dismissed, and treated like a criminal.

I finally decided to stop taking Tramadol, because I couldn't stand the thought of going back to that horrible clinic I had to go to to get the scrips, and the way they treated me there. Instead, I decided to try medical cannabis, and although it doesn't have the "magic bullet" effect that Tramadol did, it works pretty well. It took a few months to figure out the best dosing to do and when, and so on. But if I do it right, it doesn't make me "stoned" or anything like that. I often take more at night, but then I go to sleep, so if it makes me "stoned" I sleep through it. :)

The other big problem with Tramadol is that the dose you start with won't keep working, for most people. Most have to take more, and then more, and that is exactly how addiction happens. Medical cannabis is not physically addictive.

The other thing that I am working at really hard, is going back, as best I can, to an activity level that I had more or less abandoned a few years ago when I started having severe pain on a daily basis. I still have daily pain (the majority of the time I hurt somewhere), but I find that if I get up in the morning and force myself into some kind of physical activity I will feel better by the end of the day, and often do not have bad repercussions from it the next day.

I think being as active as you can be, without hurting yourself, is the best medicine for Fibro. You just have to experiment with it, to find how to gauge how much activity and which days to do it. It takes a lot of work and going through some bad days, and it takes determination. But I recommend it.
 
Definitely yes on #2. I never even attributed it to fibro, but now it kind of makes sense. It's so random, just like fibro.

I was also very active when I was younger (I'm 49), though I have increased my activity once again.
 
hi again,
The little I've researched this condition (I refuse to cal it a disease) I find former overly active people seem to be the ones with FM. I'm sure that can be proven wrong but I was also very physically active and independent . Now I'm finding it very disturbing to needing the help. Some can accept the inability to stay active graciously and perhaps someday I will too, but taking meds makes me feel somewhat normal right now. I've tried going off them too, because it's such a hassle these days to get prescribed without feeling like a criminal. I hope you all can find that one great FM doctor. When I went in with all my complaints I imagined mine would give me the line "you're just getting older" but to my surprise she was understanding and thorough. I am so thankful to her AND all of you for the understanding and support. Hope you have a wonderful day!
Hi—I’m wondering how to find a doctor who is an FM doctor? Thanks.
 
Hi all. First of all, I went to my neurologist today, who has determined that my memory problems are anxiety related. Maybe they are, to a point, but I am starting to think all my problems are from fibromyalgia. Anyway, she chewed me out for not exercising and losing weight. I am about 45 pounds overweight. The anti-anxiety med she put me on causes one to gain weight and increase triglycerides and cholesterol, I just found out. And I wanted to get off of them, but she says I need to stay on them forever. Also, she says no alcohol. I am what is considered, these days, as a moderate drinker. I might go weeks without a drink, then have three in a night if I am partying with family, or one drink two or three days in a row. I like it in my tea sometimes. I know it is not ideal, but I don't think it hurts me. I looked it up and there is no real danger unless I drink a lot too close to taking them, but it can actually increase memory problems.

As to exercise, when you can't even put your socks on without your sides seizing up, how the bleep is one to exercise? Of course that has dissipated as of late, as fibromyalgia gremlins come and go, so now I could exercise and really I have no excuse. It is lifestyle changes. I used to ride horses, hike, ride bikes anymore, which I really miss, due to bad knees. I love bike riding. I cannot hike much anymore and I no longer ride horses, since at age 70 I don't need anymore broken bones. And I know what you mean about overdoing it and what happens the next day, Sunkacola. Oh my gosh...miserable. And yes Littlee68, I agree we have to stay active. My doctor once told me that he was so glad I did not just give up, as it would put me in a wheelchair, which I would hate. I am pretty independent and just hate having to ask for help for something I used to do myself. This is not just because I am 70. It began in my 50's. I am pretty active around the house. I am up and down a lot. I reach and bend often. I like to park away from stores and walk. Things like that. Just nothing regular.

However, I do need to exercise and lose weight. I just hate gyms. So boring and repetitious, to me. A hassle with the showers and all that. I am thinking about getting a small treadmill for my home.

I have thought about trying CBD oil. I would have to pay out of pocket I think or does Medicare cover that?

Right now my plan is to look for a good doctor who can treat all my ills. I am thinking natural path. I have looked online and found a few in my area. I am going to my internets on the 5th, so will ask her about that.

Thanks so much for being here, all of you. I am finding I really need the support as of late. I felt like-bleep-after my neurologist chewed me out and woudn't even listen.
 
Hello All,

This is my first post on this web site. I have had Fibromyalgia since my early 20's, and though very athletic, suffered severe and increasing body wide pain especially after active days of college sports and equestrian competition days. I am now 70. I continued to try to be active all my life as a horseback rider, riding teacher, and competitor in upper level dressage competition, managed our farm and raised two active children but have faced serious struggle since my late 30's. At 40 I went to a Rheumatologist who diagnosed me almost immediately as having severe Fibromyalgia. Then, I was referred to a large hospital pain clinic where, after trying a number of different therapies, was advised to go on pain medication therapy. This therapy gave me back much of the life I had almost lost and for about 16 years, and with careful management, was able to reclaim much of my life though at the cost of almost continual exhaustion. As time progressed, so did the myriad and troublesome symptoms, so many that I have become exhausted trying to keep them all under some reasonable control. In the end I have lost all ability to function in any reasonable way. The awesome weight of such severe illness and pain has also left me in emotional chaos . After years of searching and researching for some relief and understanding of my terrible condition and trying many, many different therapies with little help and no improvement, I found a "Functional Medicine Doctor" who seems to finally understand what I am experiencing. He believes that Fibromyalgia is not a primary disease in itself but a symptom of other viral and biologic infections and diseases such as Lyme, toxin overload, immune dysfunction due to exhaustion of the immune functions, and much more. He believes these type of diseases are like an onion that must be peeled back one by one and as they are defeated, the FM symptoms will abate. One thing I have found that helps is summer weather; I think many of us are improved in the summer months. So, we will be moving shortly to a much warmer climate. Last fall, we spend a month in the warm weather where I experienced noticeable improvement, then terrible reversal when we returned home to winter weather and storms. I plan to keep working with this Functional Medicine doctor as well as a wonderful and understanding GP who helps me search for improvement who both support our move to a warmer more stable climate. I have had many times when I felt that life was just to hard to keep going, and have seriously considered ending my struggles, but because I have a kind, loyal, dedicated and very loving spouse who wants to spend his life with me, even still after all the heartbreak my illness has brought to our lives. Our family has all deserted us, as people often do when facing an illness they don't understand, and we have few friends, and little ability to engage in life but for the sake of our relationship, we struggle on. I wish I could be more encouraging to you all, but I do recommend that before you spend your life searching for help, take advantage of the new medical specialty of "Functional Medicine" and save yourselves years of agony and frustration. Please understand that no one, not most doctors and especially not your family and friends, have any concept of the kind of overwhelming pain and illness you are experiencing and probably never will.




























































and cannot imagine I send you my fondest wishes and encouragement to try to live as much life as you can and to keep searching for answers. Some day, this will all be better understood and perhaps there is even hope for reasonable acknowledgement of our suffering and even treatment.
 
Hi Linda Ann, and welcome to the forum.
If you can please put your posts into paragraphs, that would make it so much easier for the rest of us to read them. I have a very hard time reading a huge block of print that is not separated into any paragraphs, and I think others here may struggle with that as well. :)

I pretty much agree with that doctor, that Fibro is not a primary disease. I think in time they will find treatments for various different things that are now all lumped under the Fibro umbrella. For now, though, you are very lucky to have found someone who understands and is willing to take a different approach to healing.

I also want to encourage you to continue thinking about moving somewhere warmer. I live in a warm dry climate - a desert - and while no place is perfect, I feel that the climate here is the best kind for me. I went hiking recently in a place I have probably hiked over a hundred times, where I know the trail and have never once had a problem with it. But the day was overcast, chilly, and foggy-damp, and by the time I was descending from the mountain I was in terrible pain. I went hiking today, a typical dry and sunny day, and had no problem as usual.

So, a warmer and dryer climate might be the thing for you. I wish you luck and hope this forum can help you!
 
Hi all. First of all, I went to my neurologist today, who has determined that my memory problems are anxiety related. Maybe they are, to a point, but I am starting to think all my problems are from fibromyalgia. Anyway, she chewed me out for not exercising and losing weight. I am about 45 pounds overweight. The anti-anxiety med she put me on causes one to gain weight and increase triglycerides and cholesterol, I just found out. And I wanted to get off of them, but she says I need to stay on them forever. Also, she says no alcohol. I am what is considered, these days, as a moderate drinker. I might go weeks without a drink, then have three in a night if I am partying with family, or one drink two or three days in a row. I like it in my tea sometimes. I know it is not ideal, but I don't think it hurts me. I looked it up and there is no real danger unless I drink a lot too close to taking them, but it can actually increase memory problems.

As to exercise, when you can't even put your socks on without your sides seizing up, how the bleep is one to exercise? Of course that has dissipated as of late, as fibromyalgia gremlins come and go, so now I could exercise and really I have no excuse. It is lifestyle changes. I used to ride horses, hike, ride bikes anymore, which I really miss, due to bad knees. I love bike riding. I cannot hike much anymore and I no longer ride horses, since at age 70 I don't need anymore broken bones. And I know what you mean about overdoing it and what happens the next day, Sunkacola. Oh my gosh...miserable. And yes Littlee68, I agree we have to stay active. My doctor once told me that he was so glad I did not just give up, as it would put me in a wheelchair, which I would hate. I am pretty independent and just hate having to ask for help for something I used to do myself. This is not just because I am 70. It began in my 50's. I am pretty active around the house. I am up and down a lot. I reach and bend often. I like to park away from stores and walk. Things like that. Just nothing regular.

However, I do need to exercise and lose weight. I just hate gyms. So boring and repetitious, to me. A hassle with the showers and all that. I am thinking about getting a small treadmill for my home.

I have thought about trying CBD oil. I would have to pay out of pocket I think or does Medicare cover that?

Right now my plan is to look for a good doctor who can treat all my ills. I am thinking natural path. I have looked online and found a few in my area. I am going to my internets on the 5th, so will ask her about that.

Thanks so much for being here, all of you. I am finding I really need the support as of late. I felt like-bleep-after my neurologist chewed me out and woudn't even listen.
Hi CJ Skippy, I know that Medicare won't pay for CBD oil. Nor will any insurance company. That will always be out of pocket. If you go to a medical cannabis dispensary, however, you will find that it may be a lot cheaper than if you get it anywhere else. Also, statistically it is proven that if you take CBD along with THC in a 1:1 ratio, the CBD works a lot better. CBD alone has wildly varying effectiveness. It does nothing for my pain by itself.

Any kind of exercise that you can do is good.
When I first started back to doing regular activity/exercise, I didn't think I could do it. I would get up feeling so much pain I would think I couldn't possibly go for a walk let alone a hike. And I did have to start slowly and build up. But, what happens is that just a little activity made me feel better, not worse. And the next day was a tiny bit better.

I have found that getting exercise is the very best treatment in the world for my fibro. You gotta work up to it, but equally you gotta just DO it, no matter how you think you are feeling. For me, it is hiking, because being outdoors in and of itself is very healing for me (and I think it is for most people).

I hate gyms too. If you want to work out at home, a treadmill might be a great way to start building up your strength again. But if you can go outside at least some of the time, I think that's better.

Check online, there is a place called "Collage Video" that sells at-home exercise DVDs. They are for ALL levels, and doing different kinds of things. If you get one and end up hating it you can get a refund, so there's no risk. And they are not expensive.

One more thing: Some anti-anxiety meds make you gain weight, some will make you lose weight. Maybe see if your doctor will change you to a different one. I am taking one now that has made me lose a little bit of weight, and I started out too thin so don't really like that. But for you, it might help.

Best of luck!
 
Hello All,

This is my first post on this web site. I have had Fibromyalgia since my early 20's, and though very athletic, suffered severe and increasing body wide pain especially after active days of college sports and equestrian competition days. I am now 70. I continued to try to be active all my life as a horseback rider, riding teacher, and competitor in upper level dressage competition, managed our farm and raised two active children but have faced serious struggle since my late 30's. At 40 I went to a Rheumatologist who diagnosed me almost immediately as having severe Fibromyalgia. Then, I was referred to a large hospital pain clinic where, after trying a number of different therapies, was advised to go on pain medication therapy. This therapy gave me back much of the life I had almost lost and for about 16 years, and with careful management, was able to reclaim much of my life though at the cost of almost continual exhaustion. As time progressed, so did the myriad and troublesome symptoms, so many that I have become exhausted trying to keep them all under some reasonable control. In the end I have lost all ability to function in any reasonable way. The awesome weight of such severe illness and pain has also left me in emotional chaos . After years of searching and researching for some relief and understanding of my terrible condition and trying many, many different therapies with little help and no improvement, I found a "Functional Medicine Doctor" who seems to finally understand what I am experiencing. He believes that Fibromyalgia is not a primary disease in itself but a symptom of other viral and biologic infections and diseases such as Lyme, toxin overload, immune dysfunction due to exhaustion of the immune functions, and much more. He believes these type of diseases are like an onion that must be peeled back one by one and as they are defeated, the FM symptoms will abate. One thing I have found that helps is summer weather; I think many of us are improved in the summer months. So, we will be moving shortly to a much warmer climate. Last fall, we spend a month in the warm weather where I experienced noticeable improvement, then terrible reversal when we returned home to winter weather and storms. I plan to keep working with this Functional Medicine doctor as well as a wonderful and understanding GP who helps me search for improvement who both support our move to a warmer more stable climate. I have had many times when I felt that life was just to hard to keep going, and have seriously considered ending my struggles, but because I have a kind, loyal, dedicated and very loving spouse who wants to spend his life with me, even still after all the heartbreak my illness has brought to our lives. Our family has all deserted us, as people often do when facing an illness they don't understand, and we have few friends, and little ability to engage in life but for the sake of our relationship, we struggle on. I wish I could be more encouraging to you all, but I do recommend that before you spend your life searching for help, take advantage of the new medical specialty of "Functional Medicine" and save yourselves years of agony and frustration. Please understand that no one, not most doctors and especially not your family and friends, have any concept of the kind of overwhelming pain and illness you are experiencing and probably never will.













































Linda, I agree with everything you said and am thankful for the information about Functional Medicine. I looked it up briefly. It sounds interesting. When I see my doctor on Wednesday, I will mention it to her. As an update, I went to the clinic and got a copy of my CT. As I expected it was basically negative, as far as a non-contrast CT, except for three tiny hernias. Nothing that should bother me like I was bothered. But that pain has gone away and now I have different pain. Always changing.

Anyway, I to feel better when it is warmer out. I live in CA. It gets cold in the winter and I do feel more pain. My mother was the same way. I think she had undiagnosed Fibromyalgia. It sounds like you have really been through it.















and cannot imagine I send you my fondest wishes and encouragement to try to live as much life as you can and to keep searching for answers. Some day, this will all be better understood and perhaps there is even hope for reasonable acknowledgement of our suffering and even treatment.
 
Hi CJ Skippy, I know that Medicare won't pay for CBD oil. Nor will any insurance company. That will always be out of pocket. If you go to a medical cannabis dispensary, however, you will find that it may be a lot cheaper than if you get it anywhere else. Also, statistically it is proven that if you take CBD along with THC in a 1:1 ratio, the CBD works a lot better. CBD alone has wildly varying effectiveness. It does nothing for my pain by itself.

Any kind of exercise that you can do is good.
When I first started back to doing regular activity/exercise, I didn't think I could do it. I would get up feeling so much pain I would think I couldn't possibly go for a walk let alone a hike. And I did have to start slowly and build up. But, what happens is that just a little activity made me feel better, not worse. And the next day was a tiny bit better.

I have found that getting exercise is the very best treatment in the world for my fibro. You gotta work up to it, but equally you gotta just DO it, no matter how you think you are feeling. For me, it is hiking, because being outdoors in and of itself is very healing for me (and I think it is for most people).

I hate gyms too. If you want to work out at home, a treadmill might be a great way to start building up your strength again. But if you can go outside at least some of the time, I think that's better.

Check online, there is a place called "Collage Video" that sells at-home exercise DVDs. They are for ALL levels, and doing different kinds of things. If you get one and end up hating it you can get a refund, so there's no risk. And they are not expensive.

One more thing: Some anti-anxiety meds make you gain weight, some will make you lose weight. Maybe see if your doctor will change you to a different one. I am taking one now that has made me lose a little bit of weight, and I started out too thin so don't really like that. But for you, it might help.

Best of luck!


Thank-you for your response. My name is Cheryl. I agree with you. I do need to exercise. Just need to find out the right kind. And I also like to do it outside. Just wish my knees would let me bicycle, as I love that.
 
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