CelesteC
07-17-2001, 03:24 PM
Hi and Help!
In a misguided attempt to alleviate my own pain I decided to use a tennis ball to try to do trigger point release on my back. I don't think I released anything but I sure did get things stirred up. My back is so sore now that it is screaming at me and I am desperate for relief.
Has anyone tried either Baclofen of Neurontin and what were the results? I would like something that would address the pain but not affect me much, otherwise. Any help would be greatly appreciated. Ouch!!!
In a misguided attempt to alleviate my own pain I decided to use a tennis ball to try to do trigger point release on my back. I don't think I released anything but I sure did get things stirred up. My back is so sore now that it is screaming at me and I am desperate for relief.
Has anyone tried either Baclofen of Neurontin and what were the results? I would like something that would address the pain but not affect me much, otherwise. Any help would be greatly appreciated. Ouch!!!
Sponsor
Allen
07-17-2001, 05:45 PM
Hi Tennis Ball Buster! I tried both meds, but neither worked for ME. Don't judge by my experience, since my illness is unusually treatment resistant. A LOT of folks are being helped with Neurontin for sure. You are taking a med for the pain I presume. Al
CelesteC
07-17-2001, 08:50 PM
Allen,
I've yet to find a medicine that works for the pain. No, I take that back, I've tried oxycontin twice and although it helps somewhat, I am afraid of it's addictive potential and it makes it hard for me to function in a "normal" capacity.
I've tried viox, too, but it tears up my already fragile GI tract. I'd love to find something that just makes the pain go away and has no bad side effects. A miraculous healing would be nice but so far, God has not seen fit to answer that request. Anyway, thanks for the input and I hope you find something that works for you, it sounds like you have at least come to terms with how to live with this disease. I just keep wishing I would wake up and it would be gone but the days pass and it lingers and symptoms just seem to get worse. Sorry about the pessimism, I guess I just need to vent.
Celeste
I've yet to find a medicine that works for the pain. No, I take that back, I've tried oxycontin twice and although it helps somewhat, I am afraid of it's addictive potential and it makes it hard for me to function in a "normal" capacity.
I've tried viox, too, but it tears up my already fragile GI tract. I'd love to find something that just makes the pain go away and has no bad side effects. A miraculous healing would be nice but so far, God has not seen fit to answer that request. Anyway, thanks for the input and I hope you find something that works for you, it sounds like you have at least come to terms with how to live with this disease. I just keep wishing I would wake up and it would be gone but the days pass and it lingers and symptoms just seem to get worse. Sorry about the pessimism, I guess I just need to vent.
Celeste
MsBearNW
07-18-2001, 02:25 AM
Hi Celeste-
Have you tried a massage therapist for trigger point release? I went last week to a very good massage therapist and she worked on me for about 45 minutes and it hurt at times but wow did I ever feel better when I walked out of there! Even the next day although I was slightly sore I felt much better. My doctor wrote me a prescription for massage therapy after I asked him to, as my new insurance through my work covers up to $1,500 per year as long as I go to one they will pay for. As for Neurontin, I have been taking it only a few days now as my doctor is trying to get me off Elavil which did work wonders for me but has caused some weight gain and high blood pressure problems. So far it's working pretty good but time will tell of course when I totally quit the Elavil and am on only the Neurontin. Right now I am only taking one Neurontin at bedtime along with a decreased dose of Elavil and will eventually be taking two Neurontin per day. I have heard that it works great for alot of people. Good luck to you and take care!
Barb
Have you tried a massage therapist for trigger point release? I went last week to a very good massage therapist and she worked on me for about 45 minutes and it hurt at times but wow did I ever feel better when I walked out of there! Even the next day although I was slightly sore I felt much better. My doctor wrote me a prescription for massage therapy after I asked him to, as my new insurance through my work covers up to $1,500 per year as long as I go to one they will pay for. As for Neurontin, I have been taking it only a few days now as my doctor is trying to get me off Elavil which did work wonders for me but has caused some weight gain and high blood pressure problems. So far it's working pretty good but time will tell of course when I totally quit the Elavil and am on only the Neurontin. Right now I am only taking one Neurontin at bedtime along with a decreased dose of Elavil and will eventually be taking two Neurontin per day. I have heard that it works great for alot of people. Good luck to you and take care!
Barb
Allen
07-18-2001, 03:39 PM
Hey Celeste: just wondering...have you tried any of the stronger pain meds? I take Ultram, which usually has fewer side effects--it works well for moderate pain. When my pain is off the charts, I have used Vicodin for yrs. These meds are helpful and the potential for addiction is minimal. Have I come to terms with my pain? Yes and No: as a Christian I rely on God's grace for my daily battles. Still, I believe I could feel better with less sedation, so I keep looking. Keep your chin up,kid! Al
pixiepoodle
07-20-2001, 12:19 AM
Celeste, :wave:
My experience with Baclofen and Neurotin was scary. I work full time and while taking those meds, several times I fell asleep at my desk and my head hit my desk top. While driving 30 miles home from work (all highway), I almost hit the retaining wall numerous times from falling asleep, only I never realized I was even dozing off - it was more like going under anethesia. I also got no pain relief whatsoever from them. What has worked for me the best for the past 5 years is Ultram, Soma (muscle relaxer) and Zoloft. I take the meds on the same timetable every day (somewhat like preventative routine to keep the pain in check). I take Ultram and Some at 5:30 a.m., 12:00 p.m. and 5:30 p.m., then I take only Ultram at bedtime. I take Zoloft at 5:30 a.m. and bedtime. In some ways, the Zoloft helps me more than anything by keeping me from stressing while in pain, over situations I can't control, during hardships and from anything that would normally fustrate me. I also have a hot tub outside and a whirlpool tub in my bathroom. As long as you are in the hot water with the jets running you feel great, but about 5 min. after you get out, you feel stiff and sore again. An over-the-counter med I heard advertised on the radio in Houston is called PK5, however, the only store that carries it is Walgreens drug store. It comes in a bottle and goes on like roll-on deodorant and costs $14.99 for 2 oz. It contains mostly herbs and it is the best topical treatment I've ever used. I went thru 1 bottle a week since Fibro hurts in so many places so it cost me $60/mo. which is more than I spend on a month's supply of all three of my Fibro meds. When I first developed Fibro, I had an avg. of 3 flareups every 2 mos. because I kept trying to keep up the same pace at work and home. I eventually realized something would have to give, so it has mostly been housework and other activities outside work. Now I'll have a flareup about once every 6 mos. since I have learned to pace myself. Recently I got my dr. to prescribe Lidocaine patches (there are 30 big patches in a box which can be cut into smaller pieces if needed). They really help if you have several areas that are more painful than the rest of your body. You can keep them on for up to 11 hrs. and can use as many as 3 patches a day. Unfortunately, when I do go into a flare up, I have to grin and bear it and take life a lot slower. Since my dr. refuses to give me narcotics (Vicodin, Tylenol #3, etc.), I have occasionally been able to get them from friends or family members who have leftover prescriptions. One last parting comment is that I recently came across an interesting website www.drlowe.com (http://www.drlowe.com) re: a possible cure for Fibro thru thyroid treatment. I will mail my thyroid dr. and Fibro dr. a copy and see what they think.
------------------
My experience with Baclofen and Neurotin was scary. I work full time and while taking those meds, several times I fell asleep at my desk and my head hit my desk top. While driving 30 miles home from work (all highway), I almost hit the retaining wall numerous times from falling asleep, only I never realized I was even dozing off - it was more like going under anethesia. I also got no pain relief whatsoever from them. What has worked for me the best for the past 5 years is Ultram, Soma (muscle relaxer) and Zoloft. I take the meds on the same timetable every day (somewhat like preventative routine to keep the pain in check). I take Ultram and Some at 5:30 a.m., 12:00 p.m. and 5:30 p.m., then I take only Ultram at bedtime. I take Zoloft at 5:30 a.m. and bedtime. In some ways, the Zoloft helps me more than anything by keeping me from stressing while in pain, over situations I can't control, during hardships and from anything that would normally fustrate me. I also have a hot tub outside and a whirlpool tub in my bathroom. As long as you are in the hot water with the jets running you feel great, but about 5 min. after you get out, you feel stiff and sore again. An over-the-counter med I heard advertised on the radio in Houston is called PK5, however, the only store that carries it is Walgreens drug store. It comes in a bottle and goes on like roll-on deodorant and costs $14.99 for 2 oz. It contains mostly herbs and it is the best topical treatment I've ever used. I went thru 1 bottle a week since Fibro hurts in so many places so it cost me $60/mo. which is more than I spend on a month's supply of all three of my Fibro meds. When I first developed Fibro, I had an avg. of 3 flareups every 2 mos. because I kept trying to keep up the same pace at work and home. I eventually realized something would have to give, so it has mostly been housework and other activities outside work. Now I'll have a flareup about once every 6 mos. since I have learned to pace myself. Recently I got my dr. to prescribe Lidocaine patches (there are 30 big patches in a box which can be cut into smaller pieces if needed). They really help if you have several areas that are more painful than the rest of your body. You can keep them on for up to 11 hrs. and can use as many as 3 patches a day. Unfortunately, when I do go into a flare up, I have to grin and bear it and take life a lot slower. Since my dr. refuses to give me narcotics (Vicodin, Tylenol #3, etc.), I have occasionally been able to get them from friends or family members who have leftover prescriptions. One last parting comment is that I recently came across an interesting website www.drlowe.com (http://www.drlowe.com) re: a possible cure for Fibro thru thyroid treatment. I will mail my thyroid dr. and Fibro dr. a copy and see what they think.
------------------
CelesteC
07-20-2001, 11:09 AM
Dear Pixie Poodle,
Thanks for you post. I think I'll skip those meds, they sound pretty scary to me, too. I want something that just relaxes my muscles but doesn't leave me in a vegatative state. Glad you survived your experience.
Thanks for the thyroid site info. I checked it out and will do further investigation. Please let me know what your docs say.
I was diagnosed with hypothyroidism about three years ago and put on synthroid. A few months ago a Dr. told me that my body wasn't doing an effective job of converting the T4 to T3 and he added cytomel. I took that for a while and then another Dr. switched me to Armour syntroid and also told me I had thryroiditis.
Anyway, I plan on seeing an endocrinologist to make sure I am getting the right dose and that my body is using it effectively.
I do think there may be a connection with the fibromyalgia, although I don't really see any improvement in my symptoms as of yet.
I was getting ready to try the guaifenesin. Dr. Lowe doesn't think it's an effective protocol but I don't think it can hurt. Wishing you the best in your search to get well.
Celeste
Thanks for you post. I think I'll skip those meds, they sound pretty scary to me, too. I want something that just relaxes my muscles but doesn't leave me in a vegatative state. Glad you survived your experience.
Thanks for the thyroid site info. I checked it out and will do further investigation. Please let me know what your docs say.
I was diagnosed with hypothyroidism about three years ago and put on synthroid. A few months ago a Dr. told me that my body wasn't doing an effective job of converting the T4 to T3 and he added cytomel. I took that for a while and then another Dr. switched me to Armour syntroid and also told me I had thryroiditis.
Anyway, I plan on seeing an endocrinologist to make sure I am getting the right dose and that my body is using it effectively.
I do think there may be a connection with the fibromyalgia, although I don't really see any improvement in my symptoms as of yet.
I was getting ready to try the guaifenesin. Dr. Lowe doesn't think it's an effective protocol but I don't think it can hurt. Wishing you the best in your search to get well.
Celeste
pixiepoodle
07-23-2001, 01:36 PM
Celeste,
Have you tried to find out if there is a Fibro support group in your area? I am able to attend one in the Houston area and I have learned alot about the latest Fibro treatments from the guest speakers who are usually the best Fibro drs. in this area. They always a question and answer session following their presentation. One of those speakers was the dr. (can't remember his name due to Fibro fog) that came up with treating patients with guafenisin. The dr. I go to heard of the treatment and prescribed it even after I told him it only works under certain conditions. I took it as prescribed and it did nothing. From what I remember hearing at the presentation was that there is a certain chemical called salicylate that is in many foods, makeup, over the counter medicines that prevent guafenisin from working to release some kind of toxic stuff in your muscles that causes the pain. I'm really sorry I can't remember more of the medical jargon, but its been more than a year ago since I heard this. Anyway, just the diet alone was enough to put anyone off from trying guafenisin, i.e., basically only meat, fruit and vegetables for the rest of your life. The dr. gave out a list of women's makeup brands and other toiletries that contain salicylates with the warning that if your makeup, etc. didn't list "salicylate" on the package, you still needed to call the manufacturer to be sure it wasn't an ingredient in their product. It was also mentioned that many topical products like handlotions, suncreens, etc., have salicylates. I checked the ingredients in the topical pain cream I use (Myoflex) and its only active ingredient is Trolamine salicylate. The dr. also mentioned that if you followed all his directions, the first few days you would hurt worse than you ever have with Fibro (doesn't that some exciting?) and that the toxic chemicals that are causing your Fibro will be flushed out in your urine and that the smell is very strong and very gross (sounds like it would be very embrassing while using the restroom anywhere but home). I guess I'm not ready to give up enjoying some of my favorite foods, makeup products, etc., for the rest of life to be cured. This dr. claims to have cured many patients.
There have been wonderful speakers at the mtgs. who have have given me helpful answers and there are always free brochures and info set aside on the table. What I found to be most beneficial is to actually be in a room full of many other people experiencing the same illness I have, yet the person who conducts the meetings makes sure that the attitude of the evening is upbeat and one of encouragement. http://www.healthboards.com/ubb/gabby.gif
[This message has been edited by pixiepoodle (edited 07-23-2001).]
Have you tried to find out if there is a Fibro support group in your area? I am able to attend one in the Houston area and I have learned alot about the latest Fibro treatments from the guest speakers who are usually the best Fibro drs. in this area. They always a question and answer session following their presentation. One of those speakers was the dr. (can't remember his name due to Fibro fog) that came up with treating patients with guafenisin. The dr. I go to heard of the treatment and prescribed it even after I told him it only works under certain conditions. I took it as prescribed and it did nothing. From what I remember hearing at the presentation was that there is a certain chemical called salicylate that is in many foods, makeup, over the counter medicines that prevent guafenisin from working to release some kind of toxic stuff in your muscles that causes the pain. I'm really sorry I can't remember more of the medical jargon, but its been more than a year ago since I heard this. Anyway, just the diet alone was enough to put anyone off from trying guafenisin, i.e., basically only meat, fruit and vegetables for the rest of your life. The dr. gave out a list of women's makeup brands and other toiletries that contain salicylates with the warning that if your makeup, etc. didn't list "salicylate" on the package, you still needed to call the manufacturer to be sure it wasn't an ingredient in their product. It was also mentioned that many topical products like handlotions, suncreens, etc., have salicylates. I checked the ingredients in the topical pain cream I use (Myoflex) and its only active ingredient is Trolamine salicylate. The dr. also mentioned that if you followed all his directions, the first few days you would hurt worse than you ever have with Fibro (doesn't that some exciting?) and that the toxic chemicals that are causing your Fibro will be flushed out in your urine and that the smell is very strong and very gross (sounds like it would be very embrassing while using the restroom anywhere but home). I guess I'm not ready to give up enjoying some of my favorite foods, makeup products, etc., for the rest of life to be cured. This dr. claims to have cured many patients.
There have been wonderful speakers at the mtgs. who have have given me helpful answers and there are always free brochures and info set aside on the table. What I found to be most beneficial is to actually be in a room full of many other people experiencing the same illness I have, yet the person who conducts the meetings makes sure that the attitude of the evening is upbeat and one of encouragement. http://www.healthboards.com/ubb/gabby.gif
[This message has been edited by pixiepoodle (edited 07-23-2001).]
DMS
07-25-2001, 03:37 PM
Hello Pixiepoodle!
Are you talking about Dr. St. Amand and his procedures? It sounds like it and I have an appt. with him on Fri. I will let everyone know how it goes when I post on Saturday. I AM willing to give up certain foods and products because I am sick of feeling this way. So, I have to give it a shot! That's pretty neat that you have support group meetings you can attend...I will check my area. I hope you have a good day, Deanna
Are you talking about Dr. St. Amand and his procedures? It sounds like it and I have an appt. with him on Fri. I will let everyone know how it goes when I post on Saturday. I AM willing to give up certain foods and products because I am sick of feeling this way. So, I have to give it a shot! That's pretty neat that you have support group meetings you can attend...I will check my area. I hope you have a good day, Deanna
pixiepoodle
07-25-2001, 05:14 PM
Deanna,
Now that I think about it, the dr. met and studied with Dr. St. Armand to bring his treatment to the Houston area. If you have hypothyroidism, please check the website for www.drlowe.com. (http://www.drlowe.com.) I am going to print all the info I can off the net without buying his expensive book and give that to my thyroid dr. to look at and see if she will agree to switch my thyroid med from Synthroid to Armour. Supposedly his patients claim to be completely cured. Since I am at home for awhile for a workman's comp injury and then off on vacation for 2 weeks, it will be awhile before I find anything out.
Now that I think about it, the dr. met and studied with Dr. St. Armand to bring his treatment to the Houston area. If you have hypothyroidism, please check the website for www.drlowe.com. (http://www.drlowe.com.) I am going to print all the info I can off the net without buying his expensive book and give that to my thyroid dr. to look at and see if she will agree to switch my thyroid med from Synthroid to Armour. Supposedly his patients claim to be completely cured. Since I am at home for awhile for a workman's comp injury and then off on vacation for 2 weeks, it will be awhile before I find anything out.
lj-111
07-29-2001, 02:43 AM
I cannot seem to grasp why so many people freak out over Neurontin, except for those who have bad reactions to it like they would any other medicine which contained properties they happen to be allergic to! And of course, every one is different!!
Neurontin is not some nightmare drug, Jeez.... That drug helps a lot of people and it is just as safe as any thing else out there, and more safe than most drugs.. All it will do is make you sleepy, maybe even knock you out cold in the first few doses or so, then even that wears away and you get very well adjused to it until it doesn't even phase you.. That is why your doctor, if told, will adjust your doses until you can gradually tolerate it... Then, there are the rare few who never get adjusted I suppose. I was up to 1500mg before I quit taking it, but I started out only taking 300mg, thats how bad it knocked me out, but after the first week or so, it quit that and I took it for several months, but it never did help much, so I spared my stomach one less pill, even though it didn't bother my stomach yet..
What throws me even more, is the symptoms and illnesses a lot of people on these boards are taking it for.. Neurontin is not even a pain drug!! It is only good for neuropathy (tingling, pins and needles sensations)which can be classified as tingling and numbing, maybe even burning pain, but it is of disturbed nerve endings. But if you are taking it to stop any other pain, you are wasting your time...it will not do a thing for you.. That is all it is for.. Neuropathy!! If you use it for anything else, I can see why it messes with you!!
One thing is for sure... If I took a pill of any kind that messed me up, I'd never take it again either and I would mention it if addressed on the subject, but, lets be careful not to totally dog a drug until it scares the heck out of people, who if weren't scared off from taking it, could very well have found some great relief!!
Lisa
A word of caution... Ultram and Soma mixed is very highly addicting and is causing an epidemic of wide spread abuse.. It is also causing long term side affects, most importantly, nuerological!! I was sitting with 3 doctors just 2 weeks ago in a conference that said, because of the Ultram/Soma combination abuse craze, Ultram is about to go on the list of controlled drugs.. If and when that happens, there will be 80% of us or more, that will no longer be getting it!! Doctors are too scared to medicate, and that is why we have to change policies, even laws, to protect chronic pain sufferers like us!!
Neurontin is not some nightmare drug, Jeez.... That drug helps a lot of people and it is just as safe as any thing else out there, and more safe than most drugs.. All it will do is make you sleepy, maybe even knock you out cold in the first few doses or so, then even that wears away and you get very well adjused to it until it doesn't even phase you.. That is why your doctor, if told, will adjust your doses until you can gradually tolerate it... Then, there are the rare few who never get adjusted I suppose. I was up to 1500mg before I quit taking it, but I started out only taking 300mg, thats how bad it knocked me out, but after the first week or so, it quit that and I took it for several months, but it never did help much, so I spared my stomach one less pill, even though it didn't bother my stomach yet..
What throws me even more, is the symptoms and illnesses a lot of people on these boards are taking it for.. Neurontin is not even a pain drug!! It is only good for neuropathy (tingling, pins and needles sensations)which can be classified as tingling and numbing, maybe even burning pain, but it is of disturbed nerve endings. But if you are taking it to stop any other pain, you are wasting your time...it will not do a thing for you.. That is all it is for.. Neuropathy!! If you use it for anything else, I can see why it messes with you!!
One thing is for sure... If I took a pill of any kind that messed me up, I'd never take it again either and I would mention it if addressed on the subject, but, lets be careful not to totally dog a drug until it scares the heck out of people, who if weren't scared off from taking it, could very well have found some great relief!!
Lisa
A word of caution... Ultram and Soma mixed is very highly addicting and is causing an epidemic of wide spread abuse.. It is also causing long term side affects, most importantly, nuerological!! I was sitting with 3 doctors just 2 weeks ago in a conference that said, because of the Ultram/Soma combination abuse craze, Ultram is about to go on the list of controlled drugs.. If and when that happens, there will be 80% of us or more, that will no longer be getting it!! Doctors are too scared to medicate, and that is why we have to change policies, even laws, to protect chronic pain sufferers like us!!
cioc1212
07-29-2001, 02:00 PM
Neurontin can be a great medication if it works for you. It works for nerve pain, mine is muscular 100%. It also irritated my stomach and did nothing for me, I told my doc that it was like taking an "air pill".
Neurontin is non-addictive and has a very low incidence of side effects or problems when combined with other medication.
Neurontin is non-addictive and has a very low incidence of side effects or problems when combined with other medication.
pixiepoodle
07-29-2001, 11:02 PM
Lisa,
I have been taking the Ultram/Soma combo for over 5 years now and feel no addiction - which for me is great since I am an addiction prone person. That's why I have to shy away from Vicodin, Perocet, Tylenol #3 because after several weeks, I build an immunity and 1 pill at a time doesn't work anymore and then I also get rebound headaches which is actually my brain being ticked off its not getting more narcotics. I take the Ultram/Soma at the same times every day which has helped keep my pain at a tolerable level I can live with most of the time. Of course if I overdo something or injure myself in some way, then I go into a flareup. I am so grateful I am not having a problem with those drugs and if Ultram does get bumped up to the narcotic level, I think my doctor will continue to prescribe it since that is the only pain drug he feels safe prescribing in his practice.
I find it very sad that the people who control drug usuage can't understand how miserable it is to live with chronic pain. Maybe if more of them had health problems requiring them to take pain meds things would be different. Let's keep our fingers crossed those who take Ultram will still be able to get a prescription for it.
I have been taking the Ultram/Soma combo for over 5 years now and feel no addiction - which for me is great since I am an addiction prone person. That's why I have to shy away from Vicodin, Perocet, Tylenol #3 because after several weeks, I build an immunity and 1 pill at a time doesn't work anymore and then I also get rebound headaches which is actually my brain being ticked off its not getting more narcotics. I take the Ultram/Soma at the same times every day which has helped keep my pain at a tolerable level I can live with most of the time. Of course if I overdo something or injure myself in some way, then I go into a flareup. I am so grateful I am not having a problem with those drugs and if Ultram does get bumped up to the narcotic level, I think my doctor will continue to prescribe it since that is the only pain drug he feels safe prescribing in his practice.
I find it very sad that the people who control drug usuage can't understand how miserable it is to live with chronic pain. Maybe if more of them had health problems requiring them to take pain meds things would be different. Let's keep our fingers crossed those who take Ultram will still be able to get a prescription for it.
lj-111
07-31-2001, 02:38 AM
Pix..
Thats what I'm saying.. I almost wanted to cry when I heard about it. Evidently Ultram mixed with several different meds is becoming a problem.. It really bothers me to think about the harsh realities od getting pain meds at all one day because of wide spread drug abuse!1 I'd like to kick their tails for it too!!
Lisa
Thats what I'm saying.. I almost wanted to cry when I heard about it. Evidently Ultram mixed with several different meds is becoming a problem.. It really bothers me to think about the harsh realities od getting pain meds at all one day because of wide spread drug abuse!1 I'd like to kick their tails for it too!!
Lisa