Does anyone on here suffer from Fibromyalgia?

[mmksparbud]

Oh no, that's horrible! Haven't had any problems like that, thankfully. I'm on a very low dose of amitrityline and am doing well. So far, so good!

Yes, everybody is different. and I believe it was the adding of the trazadone that almost did me in! But the amy could dehydrate me all by itself! Glad it works for you.

 

[GirdYourLoins]

Hi, I'm a newbie on here and was diagnosed with Fibro a few years ago, one of the minority of men who have been diagnosed. I also have a food intolerance to corn which is in just about every medicine so it makes treatment difficult. I find the best thing for me is regular exercise. I am limited in what I can do, a run of about a mile is the maximum for me now whereas in the past I used to do a 3-5 mile run just to warm up at the gym. weights are the most important thing for me. I sometimes get bad joint pain when doing exercise but have to judge how much to work through it or whether it will cause longer term pain. I am also limited in how often I can exercise and once a week is normal now, but sometimes a little more frequent and sometimes less.

My biggest trigger is probably strong perfume. This stuff is made from petrol-chemicals, carcinogens, hormone inhibitors, neuro-toxins and other poisons. As someone said with heavy metal, I suggest you do what you can to get these toxins out of your body. It could save your life as well, since I noticed a link over 90% of the people I have come across who have had cancer have been people who wear very strong perfume.

 

[yeshuaslavejeff]

Hi, I'm a newbie on here and was diagnosed with Fibro a few years ago, one of the minority of men who have been diagnosed. I also have a food intolerance to corn which is in just about every medicine so it makes treatment difficult. I find the best thing for me is regular exercise. I am limited in what I can do, a run of about a mile is the maximum for me now whereas in the past I used to do a 3-5 mile run just to warm up at the gym. weights are the most important thing for me. I sometimes get bad joint pain when doing exercise but have to judge how much to work through it or whether it will cause longer term pain. I am also limited in how often I can exercise and once a week is normal now, but sometimes a little more frequent and sometimes less.

My biggest trigger is probably strong perfume. This stuff is made from petrol-chemicals, carcinogens, hormone inhibitors, neuro-toxins and other poisons. As someone said with heavy metal, I suggest you do what you can to get these toxins out of your body. It could save your life as well, since I noticed a link over 90% of the people I have come across who have had cancer have been people who wear very strong perfume.

It is good to have identified some of the things (as you call 'triggers')
that affect your health, specifically and overall.
I've had relatives and friends who recovered by doing that.
Identify the things that 'trigger' loss or pain to you, and eliminate them.
(food, fumes, chemicals, in food, air, and water; AND in drugs).

i.e. some people find that taking drugs (prescribed or not) often
increases their symptoms, or adds new symptoms.
Others have found that tap water is a no no. Even filtered water can have 'triggers', and of course milk and dairy are the biggest no no , usually.

Be encouraged that IF you can eliminate ALL of the 'triggers', you might find yourself UNexpectedly (or EXpectedly, if you meet others)
symptom free within 10 years or less.
(six months for some, if it is caught early and they "press in", finding out all they can and eliminating the 'triggers' AND eliminating other things that might not be a trigger, but that just depressed their immune system)

 

[bbbbbbb]

Hi, I'm a newbie on here and was diagnosed with Fibro a few years ago, one of the minority of men who have been diagnosed. I also have a food intolerance to corn which is in just about every medicine so it makes treatment difficult. I find the best thing for me is regular exercise. I am limited in what I can do, a run of about a mile is the maximum for me now whereas in the past I used to do a 3-5 mile run just to warm up at the gym. weights are the most important thing for me. I sometimes get bad joint pain when doing exercise but have to judge how much to work through it or whether it will cause longer term pain. I am also limited in how often I can exercise and once a week is normal now, but sometimes a little more frequent and sometimes less.

My biggest trigger is probably strong perfume. This stuff is made from petrol-chemicals, carcinogens, hormone inhibitors, neuro-toxins and other poisons. As someone said with heavy metal, I suggest you do what you can to get these toxins out of your body. It could save your life as well, since I noticed a link over 90% of the people I have come across who have had cancer have been people who wear very strong perfume.

I am also in the minority of men with fibromyalgia. I never was much of a runner, but have been able to exercise and try to do so daily. I am fortunate that I don't have any food allergies and have not detected any connection between food and fibro. I am, however, like yourself, highly sensitive to perfumes. I can immediately detect perfumes in the smallest amounts, much to the amazement of my friends. I try to avoid them as much as I can.

 

[GirdYourLoins]

I am also in the minority of men with fibromyalgia. I never was much of a runner, but have been able to exercise and try to do so daily. I am fortunate that I don't have any food allergies and have not detected any connection between food and fibro. I am, however, like yourself, highly sensitive to perfumes. I can immediately detect perfumes in the smallest amounts, much to the amazement of my friends. I try to avoid them as much as I can.

Just looked at this thread again. I spent years seeing doctors with non link to food considered. I think it always worth considering feed as a trigger, it can take a couple of days after eating something to be affected. I found out from research on the internet of my symptoms and finding food intolerance (not allergy) matched so took it on myself to do a short food elimination diet. I went sown to a basic diet white bread (reduced wheat), potatoes, peas, chicken and to make it more bearable I included dairy such as real butter, cheese and yogurt. The idea was to cut them out if I didnt see an improvement and change what I was having. After 3 days I was feeling better and started adding things back in. Sweetcorn was the first thing and within seconds of eating it had a headache and general aches and pains. Even though allergy testing was negative my doctor has confirmed it is a clear food intolerence. For the of a few days I recommend people look into it and do one themselves. It wont do any harm and could help a lot.

 

[Goatee]

Thread revival!!!

Not sure if I have Fb.

Suffered with burning pain when I sit down for approx 15 years now! Been to see docs and non could say what it is.

The pain is at the very top of the rear of each hamstring, by the butt. I have stretch marks there from weight training wrongly as a youngster. If I lift my leg up and run my fingers across the skin it is very uneven with dips and valleys.

I have tried numerous things to no avail.

4 months ago my doc put me on Pregabalin 75mg twice a day. I came off those just over a week ago due to side effects.

I have started to try different vitamins and minerals now, as well as 5-HTP and Collagen for the stretch marks.

I suffer with anxiety too. When I am stressed I think the pain is worse.

I hate sitting down! I am lying down as I type!! It can be so horrible. It's a burning pain that docs can't fathom out but I think it is related to the stretch marks.

 

[HosannaMostHigh]

Hi, I'm a newbie on here and was diagnosed with Fibro a few years ago, one of the minority of men who have been diagnosed. I also have a food intolerance to corn which is in just about every medicine so it makes treatment difficult. I find the best thing for me is regular exercise. I am limited in what I can do, a run of about a mile is the maximum for me now whereas in the past I used to do a 3-5 mile run just to warm up at the gym. weights are the most important thing for me. I sometimes get bad joint pain when doing exercise but have to judge how much to work through it or whether it will cause longer term pain. I am also limited in how often I can exercise and once a week is normal now, but sometimes a little more frequent and sometimes less.

My biggest trigger is probably strong perfume. This stuff is made from petrol-chemicals, carcinogens, hormone inhibitors, neuro-toxins and other poisons. As someone said with heavy metal, I suggest you do what you can to get these toxins out of your body. It could save your life as well, since I noticed a link over 90% of the people I have come across who have had cancer have been people who wear very strong perfume.

Hi there. Same here, a man who lives with Fibromyalgia and who has a strong aversion to deodorants and perfume. If someone sprays deodorant near me then my voice suffers, I actually feel like my throat is closing up and I find it hard to breathe. Perfume/eau de cologne/after shave is toxic to me. I get a raging headache, dizziness and feel ill for hours. Also, I get gastrointestinal problems from being near strong perfume, stomach cramps and the like.

I used to exercise regularly and did weight-training and now if I even so much as go for a leisurely walk then I usually have to come home and sit down to recover. I recently had a Deep Vein Thrombosis because I was inactive for a week due to total physical exhaustion. I'm now on blood-thinning meds for life. Fibro is unbearable at times. I was diagnosed in 2004 but it can be traced back to getting Chickenpox as an adult as very shortly after contracting that (Spring of 1999) the symptoms began.

Right now I'm in the midst of a Fibro flare. Aching limbs, pains in my neck and back, headache, Fibro fog, constant itching, my lymph nodes are up, stomach problems (cramps, need to go to the bathroom a lot), tingling in my fingers and restless legs. It's nice to be here among Christians who understand what it's like living with this. I wouldn't wish it on my worst enemy. I get some days where I feel good and then I overcompensate and before I know I'm back where I was before. What I would give to be able to do things the way I was always able to and with no resultant pain at all. Alas, those days are gone.

 

[ubicaritas]

Yes, I have experience with fibromyalgia. I've used alternative medicine for the most part.

In my case it was precipitated by stress and bad health, no doubt. There is a real problem in our culture where people are just expected to accept unmitigated stress and they don't realize that in the absence of an ability to cope, it will eventually take its toll on your body.

Another thing that will not help you is the standard American diet and lifestyle. It's too pro-inflammatory and it is deficient in nutrients.

 

[bbbbbbb]

Thread revival!!!

Not sure if I have Fb.

Suffered with burning pain when I sit down for approx 15 years now! Been to see docs and non could say what it is.

The pain is at the very top of the rear of each hamstring, by the butt. I have stretch marks there from weight training wrongly as a youngster. If I lift my leg up and run my fingers across the skin it is very uneven with dips and valleys.

I have tried numerous things to no avail.

4 months ago my doc put me on Pregabalin 75mg twice a day. I came off those just over a week ago due to side effects.

I have started to try different vitamins and minerals now, as well as 5-HTP and Collagen for the stretch marks.

I suffer with anxiety too. When I am stressed I think the pain is worse.

I hate sitting down! I am lying down as I type!! It can be so horrible. It's a burning pain that docs can't fathom out but I think it is related to the stretch marks.

The really good news is that you do not have standard symptoms associated with fibromyalgia. You have definite symptoms and your pain is localized. You also do not suffer from insomnia.

It appears to me that you suffer from some malady which is causing chronic pain. A good pain doctor should be able to help you deal with the symptoms and ease your pain.

 

[bbbbbbb]

Hi there. Same here, a man who lives with Fibromyalgia and who has a strong aversion to deodorants and perfume. If someone sprays deodorant near me then my voice suffers, I actually feel like my throat is closing up and I find it hard to breathe. Perfume/eau de cologne/after shave is toxic to me. I get a raging headache, dizziness and feel ill for hours. Also, I get gastrointestinal problems from being near strong perfume, stomach cramps and the like.

I used to exercise regularly and did weight-training and now if I even so much as go for a leisurely walk then I usually have to come home and sit down to recover. I recently had a Deep Vein Thrombosis because I was inactive for a week due to total physical exhaustion. I'm now on blood-thinning meds for life. Fibro is unbearable at times. I was diagnosed in 2004 but it can be traced back to getting Chickenpox as an adult as very shortly after contracting that (Spring of 1999) the symptoms began.

Right now I'm in the midst of a Fibro flare. Aching limbs, pains in my neck and back, headache, Fibro fog, constant itching, my lymph nodes are up, stomach problems (cramps, need to go to the bathroom a lot), tingling in my fingers and restless legs. It's nice to be here among Christians who understand what it's like living with this. I wouldn't wish it on my worst enemy. I get some days where I feel good and then I overcompensate and before I know I'm back where I was before. What I would give to be able to do things the way I was always able to and with no resultant pain at all. Alas, those days are gone.

Wow! I can definitely empathize with you. Yesterday I picked up a friend to go for an errand. When he got in the car I immediately asked him what perfume he had been using. It turned out that he had washed his hair with a perfumed shampoo. For me, the odor was really intense.

What do you take to deal with your fibromyalgia? I take gabapentin (Neurontin), duloxitane (Cymbalta), and temezapam for my sleep. The combination works for me so that I am able to function normally and have now resumed exercising. I don't get flares, fortunately, but am really strict with myself as to what I do. It is a different life, but the main thing for me is learning to cope with it. It won't go away and other people don't enjoy my complaining, so I look perfectly healthy and sound normal, so I let them think there is nothing wrong with me. However, it does help me to share with others who really understand.

 

[HosannaMostHigh]

Wow! I can definitely empathize with you. Yesterday I picked up a friend to go for an errand. When he got in the car I immediately asked him what perfume he had been using. It turned out that he had washed his hair with a perfumed shampoo. For me, the odor was really intense.

Yes, I sense this at a greater intensity than others too. Some smells are just unbelievably pungent to me. My mother has these flowers in her house in Spring and the smell from them makes me feel violently sick. I have to ask her to not have them there when I'm in the house because my whole body revolts. I can't remember the name of them now. Everyone else finds the scent pretty but to me it's such a noxious stench.

What do you take to deal with your fibromyalgia? I take gabapentin (Neurontin), duloxitane (Cymbalta), and temezapam for my sleep.

Nothing at all sadly as nothing I have been given has worked. Either I have walked around like a zombie, completely zonked out or they just haven't flat out worked so I have learned to accept my condition. Some days I will feel good and for the other 95% of the time, I won't. It's good that you can have more or less, a regular normal life. Good for you.

 

[Goatee]

My new doctor has referred me to have an MRI on my back as she found I have worn discs and tiny new bone growth in those areas which nerves from that area end up where I am getting the burning pain!

She has put me on a stronger pain killer and diazepam. I only take one a day instead of the prescribed 3 a day. I don't want to get addicted.

 

[bbbbbbb]

My new doctor has referred me to have an MRI on my back as she found I have worn discs and tiny new bone growth in those areas which nerves from that area end up where I am getting the burning pain!

She has put me on a stronger pain killer and diazepam. I only take one a day instead of the prescribed 3 a day. I don't want to get addicted.

I am glad that you are making good progress on getting a diagnosis. My advice is to do what the doctor says. Doctors face serious penalties if they knowingly get their patients addicted. OTOH, if you choose to disobey your doctor's instructions then your pain levels are your own responsibility.

 

[bbbbbbb]

Yes, I sense this at a greater intensity than others too. Some smells are just unbelievably pungent to me. My mother has these flowers in her house in Spring and the smell from them makes me feel violently sick. I have to ask her to not have them there when I'm in the house because my whole body revolts. I can't remember the name of them now. Everyone else finds the scent pretty but to me it's such a noxious stench.

Nothing at all sadly as nothing I have been given has worked. Either I have walked around like a zombie, completely zonked out or they just haven't flat out worked so I have learned to accept my condition. Some days I will feel good and for the other 95% of the time, I won't. It's good that you can have more or less, a regular normal life. Good for you.

I was in a restaurant one evening and a lady at the table next to us was wearing perfume. I am sure she barely smelled it, but it affected me so badly I had to ask our server to move us to another table as far from her as possible. I am glad that detergents now come without any odor. When my neighbor uses fabric softener I can easily smell it the moment I step out of the house.

One thing I have found that seems to help my fibro fog is folic acid. You can get it over the counter and try it and see if it helps you.

I have taken a trial-and-error approach to finding what actually does help. I can't remember all of the really horrible sleeping medications I had to endure before I was prescribed with temezapam. I have a great sleep doctor who gave me back my sleep. I wasn't getting any at all before I went to him. It was truly awful.

 

[HosannaMostHigh]

One thing I have found that seems to help my fibro fog is folic acid. You can get it over the counter and try it and see if it helps you.

I will definitely try folic acid, thank you for the tip.

I was in a restaurant one evening and a lady at the table next to us was wearing perfume. I am sure she barely smelled it, but it affected me so badly I had to ask our server to move us to another table as far from her as possible. I am glad that detergents now come without any odor. When my neighbor uses fabric softener I can easily smell it the moment I step out of the house.

I don't mind fabric softener to be honest but perfume is just yuck. I can wear aftershave, however, I can only wear one kind that doesn't send my body into shock. The problem with that is the scent is not long-lasting which is a shame.

I have taken a trial-and-error approach to finding what actually does help. I can't remember all of the really horrible sleeping medications I had to endure before I was prescribed with temezapam. I have a great sleep doctor who gave me back my sleep. I wasn't getting any at all before I went to him. It was truly awful.

Yes, going without sleep is awful. I'm glad you've found something that works for you. Sleep for me is actually okay however it's when I first awaken that's the problem. My body's all stiff, achy and sore and I always have trapped wind in the morning which is embarrassing in terms of later on when it's released plus I'm always tired no matter how much sleep I get. I can't remember what feeling normal is anymore.

 

[Goatee]

I am glad that you are making good progress on getting a diagnosis. My advice is to do what the doctor says. Doctors face serious penalties if they knowingly get their patients addicted. OTOH, if you choose to disobey your doctor's instructions then your pain levels are your own responsibility.

Control. That's what I am trying to do. Control the pain. Seeing if one tablet can give me the relief I require first before shoving 3 down my neck.

 

[bbbbbbb]

Control. That's what I am trying to do. Control the pain. Seeing if one tablet can give me the relief I require first before shoving 3 down my neck.

Yes, it is always best to start out light before going heavy. It is also important to know the potential side effects. Read the fine print very carefully. I have experienced various side effects which ranged from frightening to weird. Be careful. I found one medicine which gave me a nasty side effect which wasn't even mentioned in the fine print.

 

[GirdYourLoins]

Perfume affects me really badly but I know why. I wonder if anyone else on here may have the same thing. It is because I have a food intolerance to sweetcorn/corn/maize. It had never been suggested as a possibility by doctors but before my fibro diagnosis I was desperately searching for a cause for my symptoms and food intolerance matched a lot of the symptoms. I did a food elimination diet where you cut your diet down to a few basic things for a few days to a couple of weeks and if your symptoms improve it is likely to be a food intolerance. The reason I react to perfume is the alcohol in it is made from corn.

Finding out about this and eliminating it from my diet drastically reduced my symptoms.

 

[bbbbbbb]

I will definitely try folic acid, thank you for the tip.

I don't mind fabric softener to be honest but perfume is just yuck. I can wear aftershave, however, I can only wear one kind that doesn't send my body into shock. The problem with that is the scent is not long-lasting which is a shame.

Yes, going without sleep is awful. I'm glad you've found something that works for you. Sleep for me is actually okay however it's when I first awaken that's the problem. My body's all stiff, achy and sore and I always have trapped wind in the morning which is embarrassing in terms of later on when it's released plus I'm always tired no matter how much sleep I get. I can't remember what feeling normal is anymore.

I remember the last day I actually felt normal. It was a Sunday in October of 2010. I remember quite distinctly that I felt normal that day. I have completely stopping worrying about ever feeling normal again.

I also remember the last time I actually did not have pain. It was in the spring of the following year. I had not been sleeping and the doctor gave me a shot which is normally used for patients going into surgery. It knocks them out. He sent me home and nothing happened. I went back and he gave me an even more powerful shot. That did put me out for the entire night. I woke up without pain, feeling quite refreshed. That lasted less than a minute, but it felt great while it lasted.

One last story. A year or so later I had a colonoscopy. They put me out for that and warned me not to drive because I would be too groggy. When I came to, I felt just fine, hopped behind the wheel and actually enjoyed the day. Unfortunately, the doctor would not let me have any more of the medicine. I suppose it was probably some kind of opiode.

 

[bbbbbbb]

Perfume affects me really badly but I know why. I wonder if anyone else on here may have the same thing. It is because I have a food intolerance to sweetcorn/corn/maize. It had never been suggested as a possibility by doctors but before my fibro diagnosis I was desperately searching for a cause for my symptoms and food intolerance matched a lot of the symptoms. I did a food elimination diet where you cut your diet down to a few basic things for a few days to a couple of weeks and if your symptoms improve it is likely to be a food intolerance. The reason I react to perfume is the alcohol in it is made from corn.

Finding out about this and eliminating it from my diet drastically reduced my symptoms.

Interesting. Thanks for that. I do eat sweet corn on a regular basis, but my perfume sensitivity has diminished after I got my sleep back in order and my pain under control. I do know various fibro sufferers who have been able to find food sensitivities which affect their fibro. However, it never has been the same food. Still, for many of us there is a clear link between fibro and food, so it is a good thing to work out any possible food sensitivities.