My name is Sue I am new to this forum and I suffer from Fibromylagia and I wondered if any one else on here suffers with the same condition, it would be great to hear from you.
Fibromylagia
Fibromylagia
Hi
My name is Sue I am new to this forum and I suffer from Fibromylagia and I wondered if any one else on here suffers with the same condition, it would be great to hear from you.
My name is Sue I am new to this forum and I suffer from Fibromylagia and I wondered if any one else on here suffers with the same condition, it would be great to hear from you.
Fibromylagia
What would a person have had if they'd had back in the 1970s what you've got now?
It's a real question, I'm puzzled by diseases that didn't exist thirty years ago and suddenly six million Americans have it.
It's a real question, I'm puzzled by diseases that didn't exist thirty years ago and suddenly six million Americans have it.
Nullius in verba ... ☎||||||||||| ... To Fate I sue, of other means bereft, the only refuge for the wretched left.
When flower power came along I stood for Human Rights, marched around for peace and freedom, had some nooky every night - we took it serious.
Who has a spare two minutes to play in this month's FG Trivia game! ... My other OS is Slackware.
When flower power came along I stood for Human Rights, marched around for peace and freedom, had some nooky every night - we took it serious.
Who has a spare two minutes to play in this month's FG Trivia game! ... My other OS is Slackware.
Fibromylagia
Hi Sue and welcome to the garden. I know little about Fibromyalgia. I've read it a little. Perhaps you can educate us on the disease, reaching the diagnosis, etc. There's a lot to read and post about here. Welcome. :-6
Fibromylagia
'swot I said.
Welcome to the site Sue.
Welcome to the site Sue.
Nullius in verba ... ☎||||||||||| ... To Fate I sue, of other means bereft, the only refuge for the wretched left.
When flower power came along I stood for Human Rights, marched around for peace and freedom, had some nooky every night - we took it serious.
Who has a spare two minutes to play in this month's FG Trivia game! ... My other OS is Slackware.
When flower power came along I stood for Human Rights, marched around for peace and freedom, had some nooky every night - we took it serious.
Who has a spare two minutes to play in this month's FG Trivia game! ... My other OS is Slackware.
-
Tater Tazz
- Posts: 2938
- Joined: Tue Oct 03, 2006 9:25 am
Fibromylagia
My theropisist I see, says doctors are using fibromylagia too much lately. If they do not know what is going on with you. They agree you are in pain, but they do not want to research it. I am going through that now, but I told my surgeon, I did not beleive him! So, I am going this month to a nerosurgeon to get his opionion. I have no symtoms of fibromylagia, but have most of the symtoms of rsd. On fibromylagia, you need at least 9 of the 18 pressure ponts affecting you. I will not let a doctor tell me it's fibromylagia, I will keep looking thank you. Because there is doctors out there that can possible help.
Fibromylagia
Hi Sue, welcome to FG :-6
Fibromylagia
Hi Sue, I have it and have had it about 9 years now. My fibromyalgia is not too bad at the moment but it comes and goes to varying degrees. The worst time I had was about 14 months ago when I was advised to give up work but as the benefits I was entitled to were so pitiful I kept going!
spot;772820 wrote: What would a person have had if they'd had back in the 1970s what you've got now?
It's a real question, I'm puzzled by diseases that didn't exist thirty years ago and suddenly six million Americans have it.
Spot, good question! My hubby's first mother-in-law has fibromyalgia too, years ago she had it (it can disappear for years on end then come back) and at the time it was diagnosed as fibrositis (not sure on spelling). She's now 70 and developed it a few years back after having a severe heart attack. I don't think the two are linked as such but fibromyalgia can be triggered by trauma.
Jester;773030 wrote:
When they flare ups hit , depsite the pain I move and stay moving, I stretch, and stretch some more, I foudn that if I stayed static and rested like I was advised I got worse and I mean very much worse.
What helped me was movement, very slow steady movement, not exercise per say in the flare ups, I saved regular exercise for after the flare ups when I am in low to moderate pain.
Cold helped a bit, heat helped a bit, but what I found was that a combination of both helped more and not extreme heat or ice... a cold well rinsed wash cloth of tap water was better than Ice or a cold pack over the joint, followed by a warm tap water wash rag, the extreme cold or heat actally made my muscles more sensitive to the pain.
I found two things that really flared it up, repetative excercise of the joints involved, and chiropractic care of the joints involved. DO NOT LET A CHIROPRACTOR manipulate a hot joint, you will regret it in the extreme!
.
Jester is right about exercise. I find that keeping going helps most of the time although sometimes I just have to give in and rest. Repeated movements also cause me a lot of problems although I spend so much time typing on the computer these days that I seem to have got my hands past the worst of the symptoms! Also I cannot do any weight bearing exercises.
I find heat more comfortable to treat muscle aches than cold but extremes of temperature either way can bring on a lot of pain. Massage of any type is unbearable as I cannot cope with the direct pressure.
I don't know if you have researched much but there are a lot of additional problems that can go hand in hand with fibromyalgia e.g. menstrual problems, irritable bowel symdromw, severe and prolonged headaches, memory and concentration problems, sleep disturbance and even a need to change spectacle prescription regularly.
If you want to chat any time let me know - I know other people with the same condition and it really helps to talk at times.
spot;772820 wrote: What would a person have had if they'd had back in the 1970s what you've got now?
It's a real question, I'm puzzled by diseases that didn't exist thirty years ago and suddenly six million Americans have it.
Spot, good question! My hubby's first mother-in-law has fibromyalgia too, years ago she had it (it can disappear for years on end then come back) and at the time it was diagnosed as fibrositis (not sure on spelling). She's now 70 and developed it a few years back after having a severe heart attack. I don't think the two are linked as such but fibromyalgia can be triggered by trauma.
Jester;773030 wrote:
When they flare ups hit , depsite the pain I move and stay moving, I stretch, and stretch some more, I foudn that if I stayed static and rested like I was advised I got worse and I mean very much worse.
What helped me was movement, very slow steady movement, not exercise per say in the flare ups, I saved regular exercise for after the flare ups when I am in low to moderate pain.
Cold helped a bit, heat helped a bit, but what I found was that a combination of both helped more and not extreme heat or ice... a cold well rinsed wash cloth of tap water was better than Ice or a cold pack over the joint, followed by a warm tap water wash rag, the extreme cold or heat actally made my muscles more sensitive to the pain.
I found two things that really flared it up, repetative excercise of the joints involved, and chiropractic care of the joints involved. DO NOT LET A CHIROPRACTOR manipulate a hot joint, you will regret it in the extreme!
.
Jester is right about exercise. I find that keeping going helps most of the time although sometimes I just have to give in and rest. Repeated movements also cause me a lot of problems although I spend so much time typing on the computer these days that I seem to have got my hands past the worst of the symptoms! Also I cannot do any weight bearing exercises.
I find heat more comfortable to treat muscle aches than cold but extremes of temperature either way can bring on a lot of pain. Massage of any type is unbearable as I cannot cope with the direct pressure.
I don't know if you have researched much but there are a lot of additional problems that can go hand in hand with fibromyalgia e.g. menstrual problems, irritable bowel symdromw, severe and prolonged headaches, memory and concentration problems, sleep disturbance and even a need to change spectacle prescription regularly.
If you want to chat any time let me know - I know other people with the same condition and it really helps to talk at times.
Originally Posted by spot
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
Fibromylagia
Jester;773293 wrote: I'll raise my hand to the sleep disturbances.
Good fun, isn't it?!
Good fun, isn't it?!
Originally Posted by spot
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
Fibromylagia
Jester;773330 wrote: I gave up on sleep, durign the day I consult as a project manager for production and security. During the night I run a service company related to industrial cleaning and environmental disposal...
Sleep, I find, is overrated. :-2
Goodness! I'm a zombie if I don't get any sleep and pretty grumpy too.
I occasionally take a sleeping tablet to make sure I get a couple of good nights sleep a week, can't function safely without!!!
Sleep, I find, is overrated. :-2
Goodness! I'm a zombie if I don't get any sleep and pretty grumpy too.
I occasionally take a sleeping tablet to make sure I get a couple of good nights sleep a week, can't function safely without!!!
Originally Posted by spot
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
Fibromylagia
Hi Sue - welcome to FG. This is a good thread with all its' information about the symptoms, etc. I know several people with Fibro, but its quite hard to understand because it usually has started out as something else, and I guess if you don't live it first hand, it is very hard to understand.
Hang in there people with this terrible disease.
Hang in there people with this terrible disease.
Fibromylagia
Jester;773030 wrote: Hi Sue, welcome to the garden. I was diagnoses at one time with fibromyalgia from a military doctor as an explaination for a series of flare ups similar to arthiritis. I do have the regional pain syndroms and the associated pain patterns that they identify as being of the myriad of disorders that fall under the term fibromyalgia.
Fibromyalgia means 'muscle fiber pain' it is really a miss-diagnosis if you ask me, or rather its a labeled symptom not a true diagnosis. The better term is 'mayofascial pain syndrom' that indicates a more accurate discription for its not just the muscles and joints that are affected but the layers of fiberous tissues that envelope the muscles and tie the groups together for movement. That better explains the associated affects of both joints and muscles and the ligament and tendonous connectors that make the whole movement patterns so painful.
To this day I am not sure exactly what I had or still have other than a vague group of symptoms of muscular pain and flare ups, the pain can be intense and it seemed to be associated with groups of muscles affecting certain joints, I can tell you what doesnt work and what doesnt help!
When they flare ups hit , depsite the pain I move and stay moving, I stretch, and stretch some more, I foudn that if I stayed static and rested like I was advised I got worse and I mean very much worse.
What helped me was movement, very slow steady movement, not exercise per say in the flare ups, I saved regular exercise for after the flare ups when I am in low to moderate pain.
Cold helped a bit, heat helped a bit, but what I found was that a combination of both helped more and not extreme heat or ice... a cold well rinsed wash cloth of tap water was better than Ice or a cold pack over the joint, followed by a warm tap water wash rag, the extreme cold or heat actally made my muscles more sensitive to the pain.
I tried celebrex for a long time with some good success and the very lowest dosage of SOMA helped for a bit, but the best thing was the lowest dosage of clonopin, which is a very heavy sedative and anti depressant. I took that three times a week in an extremely low dosage, (sorry I cant remember the level) but the side affects are extreme on that and another doc took me off of it.
I found two things that really flared it up, repetative excercise of the joints involved, and chiropractic care of the joints involved. DO NOT LET A CHIROPRACTOR manipulate a hot joint, you will regret it in the extreme!
So to recap: What helped me was the mild heat and cold, massage of the muscles but dont let someone go overboard and do a heavy sports massage on you, they will flare you up even more, stay away form static positions when your flared up, when your not flared up keep a walking program going, when you able to swing your arms when you walk, and keep your neck moving and not static while you walk. Another peice of advice is keep hydrated and get plenty of seasonal fresh fruit.
The meds are tricky, go see a reputable rhuematologist and ask for a consult to a registered diatician, ask specifically what food help maintian callogen production which is the main component of muscle fiber.
Good luck and God bless, if I can help you any more dont hesitate to ask.
Hi Jester,
Sorry for the delay in responding - I have not been too good lately, struggling to get to work along with everyday things has been just about all I can manage. I have read your posting and it was really helpful and thank you for taking the time. I am currently on Nortriptyline which is also an antidepressant but has been found to help with chronic pain. I have just had a trigger point injection in the C6/C7 of my spine, which at the moment is still very sore and uncomfortable. I try to keep active everyday, I have reduced my work to part-time but am determined to continue as long as I can as I feel it is an outlet and once I am there it takes my mind away from the pain a bit.
I have taken on board all your advice and will try and incorporate what you have said.. I'll let you know how it goes. Thanks again jester for taking the time.
Hoping you are doing well.
Sue
Fibromyalgia means 'muscle fiber pain' it is really a miss-diagnosis if you ask me, or rather its a labeled symptom not a true diagnosis. The better term is 'mayofascial pain syndrom' that indicates a more accurate discription for its not just the muscles and joints that are affected but the layers of fiberous tissues that envelope the muscles and tie the groups together for movement. That better explains the associated affects of both joints and muscles and the ligament and tendonous connectors that make the whole movement patterns so painful.
To this day I am not sure exactly what I had or still have other than a vague group of symptoms of muscular pain and flare ups, the pain can be intense and it seemed to be associated with groups of muscles affecting certain joints, I can tell you what doesnt work and what doesnt help!
When they flare ups hit , depsite the pain I move and stay moving, I stretch, and stretch some more, I foudn that if I stayed static and rested like I was advised I got worse and I mean very much worse.
What helped me was movement, very slow steady movement, not exercise per say in the flare ups, I saved regular exercise for after the flare ups when I am in low to moderate pain.
Cold helped a bit, heat helped a bit, but what I found was that a combination of both helped more and not extreme heat or ice... a cold well rinsed wash cloth of tap water was better than Ice or a cold pack over the joint, followed by a warm tap water wash rag, the extreme cold or heat actally made my muscles more sensitive to the pain.
I tried celebrex for a long time with some good success and the very lowest dosage of SOMA helped for a bit, but the best thing was the lowest dosage of clonopin, which is a very heavy sedative and anti depressant. I took that three times a week in an extremely low dosage, (sorry I cant remember the level) but the side affects are extreme on that and another doc took me off of it.
I found two things that really flared it up, repetative excercise of the joints involved, and chiropractic care of the joints involved. DO NOT LET A CHIROPRACTOR manipulate a hot joint, you will regret it in the extreme!
So to recap: What helped me was the mild heat and cold, massage of the muscles but dont let someone go overboard and do a heavy sports massage on you, they will flare you up even more, stay away form static positions when your flared up, when your not flared up keep a walking program going, when you able to swing your arms when you walk, and keep your neck moving and not static while you walk. Another peice of advice is keep hydrated and get plenty of seasonal fresh fruit.
The meds are tricky, go see a reputable rhuematologist and ask for a consult to a registered diatician, ask specifically what food help maintian callogen production which is the main component of muscle fiber.
Good luck and God bless, if I can help you any more dont hesitate to ask.
Hi Jester,
Sorry for the delay in responding - I have not been too good lately, struggling to get to work along with everyday things has been just about all I can manage. I have read your posting and it was really helpful and thank you for taking the time. I am currently on Nortriptyline which is also an antidepressant but has been found to help with chronic pain. I have just had a trigger point injection in the C6/C7 of my spine, which at the moment is still very sore and uncomfortable. I try to keep active everyday, I have reduced my work to part-time but am determined to continue as long as I can as I feel it is an outlet and once I am there it takes my mind away from the pain a bit.
I have taken on board all your advice and will try and incorporate what you have said.. I'll let you know how it goes. Thanks again jester for taking the time.
Hoping you are doing well.
Sue
Fibromylagia
Tater Tazz;773117 wrote: My theropisist I see, says doctors are using fibromylagia too much lately. If they do not know what is going on with you. They agree you are in pain, but they do not want to research it. I am going through that now, but I told my surgeon, I did not beleive him! So, I am going this month to a nerosurgeon to get his opionion. I have no symtoms of fibromylagia, but have most of the symtoms of rsd. On fibromylagia, you need at least 9 of the 18 pressure ponts affecting you. I will not let a doctor tell me it's fibromylagia, I will keep looking thank you. Because there is doctors out there that can possible help.
Hi,
I can understand what your saying and agree that same doctors are quick to label FM while others do not beleive in it.
I unfortunaley had all the trigger points so its was dx'd and confirmed as FM, I have had so many tests before the final dx. Hope you fina a doctor that can confirm to you exactly what you have.
Wishing you well.
Sue
Hi,
I can understand what your saying and agree that same doctors are quick to label FM while others do not beleive in it.
I unfortunaley had all the trigger points so its was dx'd and confirmed as FM, I have had so many tests before the final dx. Hope you fina a doctor that can confirm to you exactly what you have.
Wishing you well.
Sue
Fibromylagia
Tater Tazz;773117 wrote: My theropisist I see, says doctors are using fibromylagia too much lately. If they do not know what is going on with you. They agree you are in pain, but they do not want to research it. I am going through that now, but I told my surgeon, I did not beleive him! So, I am going this month to a nerosurgeon to get his opionion. I have no symtoms of fibromylagia, but have most of the symtoms of rsd. On fibromylagia, you need at least 9 of the 18 pressure ponts affecting you. I will not let a doctor tell me it's fibromylagia, I will keep looking thank you. Because there is doctors out there that can possible help.
Good for you. I am sorry for anyone who is suffering, however, I believe this name of a disease is one doctors use when they cannott diagnose what is wrong with a patient. Or when they cant be bothered with a patients complaints.
Good for you. I am sorry for anyone who is suffering, however, I believe this name of a disease is one doctors use when they cannott diagnose what is wrong with a patient. Or when they cant be bothered with a patients complaints.
[FONT=Microsoft Sans Serif][/FONT]
Fibromylagia
weeder;796859 wrote: Good for you. I am sorry for anyone who is suffering, however, I believe this name of a disease is one doctors use when they cannott diagnose what is wrong with a patient. Or when they cant be bothered with a patients complaints.
I can only speak from my own experience but a lot of drs here have refused to acknowledge the existance of fibromyalgia in the recent past. Pretty much the same as they used to be with ME. I'm lucky that my doc isn't one of them, in my case anyway. He knows me well enough to believe that I'm not swinging the lead but he was reluctant to 'label' a friend who has it much worse than me. Doctors are funny creatures!!
I can only speak from my own experience but a lot of drs here have refused to acknowledge the existance of fibromyalgia in the recent past. Pretty much the same as they used to be with ME. I'm lucky that my doc isn't one of them, in my case anyway. He knows me well enough to believe that I'm not swinging the lead but he was reluctant to 'label' a friend who has it much worse than me. Doctors are funny creatures!!
Originally Posted by spot
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
She is one fit bitch innit, that Immy
Don't worry; it only seems kinky the first time
-
tedhutchinson
- Posts: 254
- Joined: Tue Nov 15, 2005 11:02 am
Fibromylagia
Vitamin D deficiency is associated with anxiety and depression in fibromyalgia.
I have collected together much of the research showing the strong connection between Vitamin D deficiency and Fibromyalgia here.
It is important that everyone with a fibromyalgia diagnosis or is considering the possibility, first has a 25(OH)D blood test.
Direct Labs—Vitamin D Test
or in the UK The Doctors Laboratory£40
Vitamin D3 then needs to be provided, each 400iu raises status 2.8ng/ml or 7nmol/l sufficient to raise status over 40ng/ml-100nmol/l or ideally 50ng/ml 125nmol/l . It usually takes around 4000iu/daily in winter to attain and maintain optimal status.
Carlson, Vitamin D, 2000 IU, 360 Soft Gels $11.28 If you haven't used Iherb before WAB66 will save you $5. If you are ordering from the UK watch you don't get caught for VAT + Handling charge on orders £18 or more KEEP YOUR ORDER VALUE BELOW $36.
Having eliminated Vitamin D insufficiency from the scenario there are other supplements that may also be beneficial.
Magnesium Malate is worth a try. Magnesium is an essential mineral in over 300 enzymatic reactions in metabolism. These reactions include those involved in the Krebs cycle (one of the body's main energy production processes), energy storage, the breakdown of fatty acids, protein synthesis, DNA metabolism, neurotransmitter activity and hormone regulation. We know that magnesium will help prevent the build up of pain in conditions such as FMS and like Vit D it is another very common deficiency.
You may also find 5HTP worth trying This provides an explanation of why it may help.
Melatonin this research The effect of melatonin in patients with fibromyalgia: a pilot study. suggests it's worth giving it a trial. $6.70 for 180 nights better sleep is a small price.
Obviously when researchers are doing trials they want to see if making one change produces any measurable difference. You are not a scientific study, so it doesn't matter to you if sorting out the Vitamin D insufficiency and the magnesium deficiency you also tackle the sleep disturbance and mood disorder at the same time. There is logical reason and scientific evidence to support each and all of these interventions.
I should also point out that should you decide to take an effective amount of Vitamin D3 say 4000-5000iu daily that even at that rate it will take 3 months before you can be sure you will have reached a status of over 100nmol/l. Your body has some 10 trillion cells most of which have a vitamin d requirement. So it could be over a year before each cell has it's full complement of vitamin d and you feel the full effect.
I have collected together much of the research showing the strong connection between Vitamin D deficiency and Fibromyalgia here.
It is important that everyone with a fibromyalgia diagnosis or is considering the possibility, first has a 25(OH)D blood test.
Direct Labs—Vitamin D Test
or in the UK The Doctors Laboratory£40
Vitamin D3 then needs to be provided, each 400iu raises status 2.8ng/ml or 7nmol/l sufficient to raise status over 40ng/ml-100nmol/l or ideally 50ng/ml 125nmol/l . It usually takes around 4000iu/daily in winter to attain and maintain optimal status.
Carlson, Vitamin D, 2000 IU, 360 Soft Gels $11.28 If you haven't used Iherb before WAB66 will save you $5. If you are ordering from the UK watch you don't get caught for VAT + Handling charge on orders £18 or more KEEP YOUR ORDER VALUE BELOW $36.
Having eliminated Vitamin D insufficiency from the scenario there are other supplements that may also be beneficial.
Magnesium Malate is worth a try. Magnesium is an essential mineral in over 300 enzymatic reactions in metabolism. These reactions include those involved in the Krebs cycle (one of the body's main energy production processes), energy storage, the breakdown of fatty acids, protein synthesis, DNA metabolism, neurotransmitter activity and hormone regulation. We know that magnesium will help prevent the build up of pain in conditions such as FMS and like Vit D it is another very common deficiency.
You may also find 5HTP worth trying This provides an explanation of why it may help.
Melatonin this research The effect of melatonin in patients with fibromyalgia: a pilot study. suggests it's worth giving it a trial. $6.70 for 180 nights better sleep is a small price.
Obviously when researchers are doing trials they want to see if making one change produces any measurable difference. You are not a scientific study, so it doesn't matter to you if sorting out the Vitamin D insufficiency and the magnesium deficiency you also tackle the sleep disturbance and mood disorder at the same time. There is logical reason and scientific evidence to support each and all of these interventions.
I should also point out that should you decide to take an effective amount of Vitamin D3 say 4000-5000iu daily that even at that rate it will take 3 months before you can be sure you will have reached a status of over 100nmol/l. Your body has some 10 trillion cells most of which have a vitamin d requirement. So it could be over a year before each cell has it's full complement of vitamin d and you feel the full effect.
-
tedhutchinson
- Posts: 254
- Joined: Tue Nov 15, 2005 11:02 am
Fibromylagia
tedhutchinson;805615 wrote: If you haven't used Iherb before WAB66 will save you $5.
That IHERB code should have read WAB666 sorry to anyone who tried it unsuccessfully.
That IHERB code should have read WAB666 sorry to anyone who tried it unsuccessfully.