Toodle
11-12-2004, 11:33 PM
I hate the fact that we have to live with this pain everyday. I was diagnosed with Fibro in July. Doctors have basically told me there's not much they can do. I had a nerve conduction/EMG muscle study & was told I had a mild myopathy of my muscles. They say this could be why I have twitches & spasms all over my body. Otherwise, I don't really know what a myopathy is & if it goes with fibro. My legs are terrible cuz different parts of the skin just quiver sometimes as often as every few minutes. Does anyone else have these twitches and spasms? I have bad "costochondritis" (if that's what it really is) pain terrible in my back & entire left rib cage sore. Pain in back runs down my left flank. Some days my entire body just aches like I have the flu other days I just have pains here then pains there. I get a weird pain at the base of my skull often. My scalp hurts & I get alot of headaches. I had a bone scan done that showed inflammation of the sacroiliac joints & noticed another post that Tutti Frutti said the same so I'll start another thread on that. I get tired so easily. I'm on ampitriplyne 50 mg at bedtime, Xanax .25mg 3x/day and Clonazepam at bedtime for the twitching. Also taking Vicodin for the pain & sometimes Flexeril. I've been flared so bad for so long I wonder if it will ever get better. I'm really starting to feel trapped, depressed, anxious, everything. I'm afraid of dying but it's to the point that I'm afraid of living too. I spend so much time being afraid of the pain and weird body symptoms and worrying that it's going to get worse or that it's something more serious the docs are missing. I worry about the twitching & spasms, I'm afraid they are never going to stop and they'll get worse. I've decided that I have to seek counseling to deal with this, cuz I'm not doing too good of a job myself. Have a husband & 9 month old daughter. I want my life back! I'm just so scared.
Sponsor
pa235
11-14-2004, 09:52 AM
HI Char,
I have Fm for over 20 years and this dd still scares me, I am stil getting new pain and pain sites. I also have costro and get the left sided breast, chest pain. I am exactly like you, sore scalp, neck legs, arms and ribs. Get the drunken feeling in my head and off balance.
I would like to tell you that things will get better, but as you read the boards youwill find there is not much hope of that as of now. Hang in there.
Hugs, Linda
I have Fm for over 20 years and this dd still scares me, I am stil getting new pain and pain sites. I also have costro and get the left sided breast, chest pain. I am exactly like you, sore scalp, neck legs, arms and ribs. Get the drunken feeling in my head and off balance.
I would like to tell you that things will get better, but as you read the boards youwill find there is not much hope of that as of now. Hang in there.
Hugs, Linda
Snowbird
11-14-2004, 01:49 PM
[ removed ] The thing about Fibro is that there is not much known about it and the symptoms vary from one person to another.
I'm waiting to see a rhumatologist (spelling?) and also to have a bone scan. From what I've been reading on various boards it is up to the rhumatologist to determine if you do or do not have Fibro. So, depending on how knowlegable the rhumatologist is, you may or may not be diagnosed as having Fibromyalgia.
My thinking is .... the heck with what the rummy .... I KNOW I have Fibro And I will treat myself and if my GP doesn't confer with me then I'll find another one who will. I refuse to be subjected to "know it all" physicians who DON'T know it all and refuse to educate themselves. More than once I disagreed with the medical community and properly diagnosed my condition and took steps to treat it.
... example? I have Trigeminal Neuralgia. I suffered terribly for over a month (almost 2 months) with excruciating pain through the left side of my face. I spent those months crying in agony, going to the emergency ward of the hospital, walk in clinics, local MDs, ENT doctors until finally I went online and typed in my symptoms and voila .... a diagnosis was made. It wasn't an ear infection as all those docs had been treating me for. Further research (like ... 2 days research) provided the information that chiropractic has been proven beneficial for this condition.
I threw away the antibiotics and pain pills and visited my chiropractor who YES did know about Trigeminal Neuralgia. One adjustment removed 80% of the pain and a follow up adjustment removed the other 20%.
The next month I had my scheduled visit to a Neurologist who sent me for an MRI and CAT scan and did neurological testing. The diagnosis? I had Trigeminal Neuralgia that responded favourably to chiropractic treatments (2). And for this he went to medical school? :rolleyes:
So what I'm trying to say here is to follow your hunches, listen to what your body is telling you. Mine told me that a low carb diet was better for the Fibro. The inflamation is not as severe when I eat low carb. While we can get information from others, each of us is different and we have to do what is best for us.
I'm waiting to see a rhumatologist (spelling?) and also to have a bone scan. From what I've been reading on various boards it is up to the rhumatologist to determine if you do or do not have Fibro. So, depending on how knowlegable the rhumatologist is, you may or may not be diagnosed as having Fibromyalgia.
My thinking is .... the heck with what the rummy .... I KNOW I have Fibro And I will treat myself and if my GP doesn't confer with me then I'll find another one who will. I refuse to be subjected to "know it all" physicians who DON'T know it all and refuse to educate themselves. More than once I disagreed with the medical community and properly diagnosed my condition and took steps to treat it.
... example? I have Trigeminal Neuralgia. I suffered terribly for over a month (almost 2 months) with excruciating pain through the left side of my face. I spent those months crying in agony, going to the emergency ward of the hospital, walk in clinics, local MDs, ENT doctors until finally I went online and typed in my symptoms and voila .... a diagnosis was made. It wasn't an ear infection as all those docs had been treating me for. Further research (like ... 2 days research) provided the information that chiropractic has been proven beneficial for this condition.
I threw away the antibiotics and pain pills and visited my chiropractor who YES did know about Trigeminal Neuralgia. One adjustment removed 80% of the pain and a follow up adjustment removed the other 20%.
The next month I had my scheduled visit to a Neurologist who sent me for an MRI and CAT scan and did neurological testing. The diagnosis? I had Trigeminal Neuralgia that responded favourably to chiropractic treatments (2). And for this he went to medical school? :rolleyes:
So what I'm trying to say here is to follow your hunches, listen to what your body is telling you. Mine told me that a low carb diet was better for the Fibro. The inflamation is not as severe when I eat low carb. While we can get information from others, each of us is different and we have to do what is best for us.
septemberwoman
11-15-2004, 06:59 AM
I have only been totally pain free once since the mid 1980s and that was after an colonoscopy was finished and I was still feeling the Versed they had given me. I went home and lay in my bed for the first time in 24 years without pain. I cried and couldn't remember those pre*fibro days. It was a very difficult time for me.
Romans8
11-15-2004, 11:37 PM
Char123, Be of good courage. Don't give up. I hope I can be of some help with what I've gone through. I've read a lot of the posts and think it is great to have the support of others. Warning, I'm a horrible speller.
I've had FMS for 35 years. I wasn't able to put a name to it until I was reading in a book to treat one of my symptoms which at the time was Irritable bowel syndrom. Drs. can't diagnose FMS and they try to say it is like Rhuemitoid Arthritis but it isn't at all and it can't be found on X-rays. They say it's a catch all word and they all have their own idea of what it is and I too am tired of being treated like I don't know a thing. I also diagnosed myself and it has sense been confirmed. It is known that it can be brought on by stressfull situations, accidents, illnesses etc. I had mono when I was 15 and have Epstein Bar ever since. At the onset of the worst fibro, I did CoQ10 and Germanium. It really helped until we had more bad situations come up. It has continued to get worse due to many stressful events.
I have heard that it is viral which EB is viral. I read that it is a repeating virus and that this DR. had the viral cure but you could only get it through him. Yeah. So I started my own search on anti-virals. I started taking Olive leaf, grapeseed extract, Quercetin (which is specifically for repetivtive viruses) Oregano oil, No Garlic though, in larger than normal quanties, starting slowly and increasing the amount as I could handle it. I noticed after awhile I was noticably feeling better even during the rainy season, then I took a bad fall injuring my ribs and back. Between my Chiropractor, which was a God send, he doesn't use traditional methods, he is truly gifted and has kept me going. I've had major, Verdigo, Myofacia?? Pain all over, and skin crawling from head to toe. Painful where ever you touch me. Pain increasing with the barametric pressure. I saw a naturopath that gave me a metal pill with a battery in it called Sputnik. It worked great. It rids your body of parasites but the side effect is that is gets rid of gallstones too. My side effect is that it cured my Irritable Bowl Syndrom and I haven't had it in 4 years. I use to couldn't leave my house without having my husband pull over so I could go behind a tree.
After more research, I cut out starches, sugars, alcohol, low carbs, lots of fruits and natural sugars, dairy products, eggs, night shade plants, citris and most grains and peanuts as they all have fungus and molds that irritate FMS, not a lot of meats especially red meats. Most all of the people that are doing really bad that I talk to and are on major pain killers, crying and depressed are still eating all the wrong foods and drinking alcohol causing a lot of food allergies, sugars etc. and we all have parsites. And believe I improve as long as I do keep on a pretty strict diet and do cleanses often. I don't torture myself and do treat myself to something on my no no list once in awhile but then you have to get right back to it and drink lots of water. If you crave sweets and carbs that usually means you have candida and parasites. That's what they thrive on. The myth is that you usually have a yeast infection if you have candida overgrowth but this isn't true. Testing won't show anything because parasites are all through your body and yeast also. Very little is in your lower bowel so you won't find any in your stool unless they're dead. If your constantly scratching everywhere especially your anise and skin then you have parasites and candida and parasites go hand in hand. Also symptoms are constipation, being bloated all the time, always have gas, foul smelling bathroom visits. I don't have any of this anymore and when I start to itch I know it's time to do a cleanse. I do take Vicodine and Soma, for pain and Restoril and Flexeril for sleep along with Melatonin. I've had my hormones checked and I'm on Bio Identical hormone therapy which don't give you the bad side effects as replacement hormone theapy. Don't take your Drs. word alone for the test results. Have him consult with your Pharmacist. My Dr. is young and new and wanted to put me on synthetic Estogen but I gave my Pharmacist my lab work and he said that was all wrong that this is what a lot of Drs. do, like estrogen is the cure all. I didn't need any Estrogen at all, but that I was low in Progesterone which I have been low majorly low all my life. Also FMS patients usually have low thyroid and their adrenal is shot. You can have these checked with the same saliva test. Your cortisol level can mess everything up even though you get a normal reading. Read up on it.
Get with a Pharmacist that does compounding (mixing from scratch)as they are trained for this and stay away from synthetics. It makes symptoms worse and the risks are too high.
I recommend a candida cleanse under the supervision of a homeopathic Dr. or one that will work with you because I almost died from the candida die off that nobody told me about, also do a parasite cleanse with herbal tinctures and teas often and wash your vegetables real well. Get organic if possible. It isn't much more than the pestacide laden stuff and it's beautiful now days but you will have to wash it with a peroxide rinse or veggie soap. Chemical sensitivity or intollerance is very prevalent now days and in FMS people. A liver gallbladder kidney, bladder cleanse is essensial especially if you are on a lot of medications. These recommendations need to be a life style not a once in awhile thing. I believe we can beat this thing together. Bowel cleansing made a big difference in me plus I lost weigh. A possitive outlook really does help. Out of the mouth comes life and death. What we speak can affect how we feel. For those of you who believe the Bible, everything I've said is scriptural from diet to cleanses. I'm not talking about being in denial just uplift yourself with things that make you happy. If your hormones are off it can cause so many fibro symptoms in your body. It's so important to get a good reading. There are labs on the net you can get saliva tests sent to you and Pharmacies that have the information on how to go about getting them also. I've experienced everything you've all said and I don't mind you emailing. Even if you just feel like crying, it's okay.
This disease is very hard on marriages. I encourage you to get as much information to your spouse without being too overwhelming to them. My husband has been great and would be happy to talk with you, sympathize and encourage.
I just encourage you all to hang in there and know you are not alone and you are loved.
As for my recent nightmare of an experience all my Drs. wanting me to keep trying anti depressants for pain.
I'm not depressed. I use to be but not anymore inspite of my pain however, they wouldn't treat me until I obeyed and took this last one, the miracle pain manager Cymbalta. I swear I thought I was going to die. I've had many bad effects from several others and at one time Serzone did help me but Paxil had a horrible effect on me too. Suicidal which by the way is not an option. But this one almost did me in. I thought I was going to snap. Scared my husband to death as I lay there catotonic, curled up in a fetal possision afraid to move or I'd lose it. It was like I was leaning over a cliff and felt compelled to go over if I moved one inch or uncurled I would fall. It was a 24 hour pill and 10% of all patients got these side effects.
My Dr. didn't check into it well enough. His info told him only .1% had the side effects.
Please don't be a guennie pig. It almost cost me my sanity.
I don't feel that the new drugs are tested enough. My husband read that a totally healthy 19 year old hung herself in the study clinic. She was there to earn money for college and this is what I was on.
Massages are very good and hard isn't better. They have to be very in tune to your painful areas. Hot baths and light no impact excersize. Degenerative bone disease is also a symptom of FMS usually spondilolisis in the lower virtabre so watch your back, literally.
I hope some of what I have put here helps. I definetly don't know it all and I would love to hear from anyone who has imput as to what helped them. It's also very important to incorperate this lifestyle into the rest of the family. If you do a parasite cleanse but your husband doesn't it won't do you much good just by sleeping in the same bed with him. This goes for kids too. Everybody has parasites. My family refuses to think about it but this doesn't make them go away. You'll be very pleased at the results. Check the subject out on the web. You'll be surprized
I've probably broken every rule here. I hope not. I really just want to help and uplift. I hope I haven't confused anyone.
Thanks to everyone for your input. :wave:
I've had FMS for 35 years. I wasn't able to put a name to it until I was reading in a book to treat one of my symptoms which at the time was Irritable bowel syndrom. Drs. can't diagnose FMS and they try to say it is like Rhuemitoid Arthritis but it isn't at all and it can't be found on X-rays. They say it's a catch all word and they all have their own idea of what it is and I too am tired of being treated like I don't know a thing. I also diagnosed myself and it has sense been confirmed. It is known that it can be brought on by stressfull situations, accidents, illnesses etc. I had mono when I was 15 and have Epstein Bar ever since. At the onset of the worst fibro, I did CoQ10 and Germanium. It really helped until we had more bad situations come up. It has continued to get worse due to many stressful events.
I have heard that it is viral which EB is viral. I read that it is a repeating virus and that this DR. had the viral cure but you could only get it through him. Yeah. So I started my own search on anti-virals. I started taking Olive leaf, grapeseed extract, Quercetin (which is specifically for repetivtive viruses) Oregano oil, No Garlic though, in larger than normal quanties, starting slowly and increasing the amount as I could handle it. I noticed after awhile I was noticably feeling better even during the rainy season, then I took a bad fall injuring my ribs and back. Between my Chiropractor, which was a God send, he doesn't use traditional methods, he is truly gifted and has kept me going. I've had major, Verdigo, Myofacia?? Pain all over, and skin crawling from head to toe. Painful where ever you touch me. Pain increasing with the barametric pressure. I saw a naturopath that gave me a metal pill with a battery in it called Sputnik. It worked great. It rids your body of parasites but the side effect is that is gets rid of gallstones too. My side effect is that it cured my Irritable Bowl Syndrom and I haven't had it in 4 years. I use to couldn't leave my house without having my husband pull over so I could go behind a tree.
After more research, I cut out starches, sugars, alcohol, low carbs, lots of fruits and natural sugars, dairy products, eggs, night shade plants, citris and most grains and peanuts as they all have fungus and molds that irritate FMS, not a lot of meats especially red meats. Most all of the people that are doing really bad that I talk to and are on major pain killers, crying and depressed are still eating all the wrong foods and drinking alcohol causing a lot of food allergies, sugars etc. and we all have parsites. And believe I improve as long as I do keep on a pretty strict diet and do cleanses often. I don't torture myself and do treat myself to something on my no no list once in awhile but then you have to get right back to it and drink lots of water. If you crave sweets and carbs that usually means you have candida and parasites. That's what they thrive on. The myth is that you usually have a yeast infection if you have candida overgrowth but this isn't true. Testing won't show anything because parasites are all through your body and yeast also. Very little is in your lower bowel so you won't find any in your stool unless they're dead. If your constantly scratching everywhere especially your anise and skin then you have parasites and candida and parasites go hand in hand. Also symptoms are constipation, being bloated all the time, always have gas, foul smelling bathroom visits. I don't have any of this anymore and when I start to itch I know it's time to do a cleanse. I do take Vicodine and Soma, for pain and Restoril and Flexeril for sleep along with Melatonin. I've had my hormones checked and I'm on Bio Identical hormone therapy which don't give you the bad side effects as replacement hormone theapy. Don't take your Drs. word alone for the test results. Have him consult with your Pharmacist. My Dr. is young and new and wanted to put me on synthetic Estogen but I gave my Pharmacist my lab work and he said that was all wrong that this is what a lot of Drs. do, like estrogen is the cure all. I didn't need any Estrogen at all, but that I was low in Progesterone which I have been low majorly low all my life. Also FMS patients usually have low thyroid and their adrenal is shot. You can have these checked with the same saliva test. Your cortisol level can mess everything up even though you get a normal reading. Read up on it.
Get with a Pharmacist that does compounding (mixing from scratch)as they are trained for this and stay away from synthetics. It makes symptoms worse and the risks are too high.
I recommend a candida cleanse under the supervision of a homeopathic Dr. or one that will work with you because I almost died from the candida die off that nobody told me about, also do a parasite cleanse with herbal tinctures and teas often and wash your vegetables real well. Get organic if possible. It isn't much more than the pestacide laden stuff and it's beautiful now days but you will have to wash it with a peroxide rinse or veggie soap. Chemical sensitivity or intollerance is very prevalent now days and in FMS people. A liver gallbladder kidney, bladder cleanse is essensial especially if you are on a lot of medications. These recommendations need to be a life style not a once in awhile thing. I believe we can beat this thing together. Bowel cleansing made a big difference in me plus I lost weigh. A possitive outlook really does help. Out of the mouth comes life and death. What we speak can affect how we feel. For those of you who believe the Bible, everything I've said is scriptural from diet to cleanses. I'm not talking about being in denial just uplift yourself with things that make you happy. If your hormones are off it can cause so many fibro symptoms in your body. It's so important to get a good reading. There are labs on the net you can get saliva tests sent to you and Pharmacies that have the information on how to go about getting them also. I've experienced everything you've all said and I don't mind you emailing. Even if you just feel like crying, it's okay.
This disease is very hard on marriages. I encourage you to get as much information to your spouse without being too overwhelming to them. My husband has been great and would be happy to talk with you, sympathize and encourage.
I just encourage you all to hang in there and know you are not alone and you are loved.
As for my recent nightmare of an experience all my Drs. wanting me to keep trying anti depressants for pain.
I'm not depressed. I use to be but not anymore inspite of my pain however, they wouldn't treat me until I obeyed and took this last one, the miracle pain manager Cymbalta. I swear I thought I was going to die. I've had many bad effects from several others and at one time Serzone did help me but Paxil had a horrible effect on me too. Suicidal which by the way is not an option. But this one almost did me in. I thought I was going to snap. Scared my husband to death as I lay there catotonic, curled up in a fetal possision afraid to move or I'd lose it. It was like I was leaning over a cliff and felt compelled to go over if I moved one inch or uncurled I would fall. It was a 24 hour pill and 10% of all patients got these side effects.
My Dr. didn't check into it well enough. His info told him only .1% had the side effects.
Please don't be a guennie pig. It almost cost me my sanity.
I don't feel that the new drugs are tested enough. My husband read that a totally healthy 19 year old hung herself in the study clinic. She was there to earn money for college and this is what I was on.
Massages are very good and hard isn't better. They have to be very in tune to your painful areas. Hot baths and light no impact excersize. Degenerative bone disease is also a symptom of FMS usually spondilolisis in the lower virtabre so watch your back, literally.
I hope some of what I have put here helps. I definetly don't know it all and I would love to hear from anyone who has imput as to what helped them. It's also very important to incorperate this lifestyle into the rest of the family. If you do a parasite cleanse but your husband doesn't it won't do you much good just by sleeping in the same bed with him. This goes for kids too. Everybody has parasites. My family refuses to think about it but this doesn't make them go away. You'll be very pleased at the results. Check the subject out on the web. You'll be surprized
I've probably broken every rule here. I hope not. I really just want to help and uplift. I hope I haven't confused anyone.
Thanks to everyone for your input. :wave:
tutti-fruti
11-16-2004, 03:06 AM
Roman S8, that was a great post. Very helpful indeed. Could you please elaborate more on your diet ? I mean, what exactly and specifically should us fibros avoid to eat ? is it starch, meaning no bread, no pasta, no rice and no potatoes whatsoever ? please let us know exactly about the diet. Thanks.