Chronic Pain Management Support Group

[Abby5]

Nobody give up hope, some days that is all one has.

Thanks Skippy that helps...especially knowing how much pain you suffer with every day

[tidytaurus]

I agree don't give up hope. I just had a mad thought wouldn't it be great if doctors could somehow mind meld (like Spock) into us and feel our pain. I betcha we would get results. Sorry this comment must be drug induced I am in total agony this evening.

[Angela273]

Are you on any blood thinners? It`s supposed to help reduce migraines, but it could also be interfering with the pain meds. I was on warfarin for a while, but had to switch to a shot of heparin instead when I was on dialysis, cause the warfarin had a weird reaction with the blood pressure pills I was on. It wasn`t readily apparent that that was the problem, since the 2 aren`t supposed to interact (if I had a penny for every time I heard a doctor say either 'I've never seen that before' or 'you're not supposed to react that way', then I could buy my own hospital ).

Feel free to pm me if you need someone to vent to.

Some people find that blood thinners help. I have found that one of the up sides to the tinzaparin (LMW heparin) is that it has reduced my migraines. I used to be in the highest category for frequency and severity of migraines. I used to have a migtaine 20 out of 30 days (with treatments). I now have about 10 migraines a month, which is a nice side effect of the medication. As I have said in previous posts I am on the tinzaparin because I have a DVT and PE's and experienced total warfarin failure.

[dealsniffer]

Abby I remember before I was diagnosed with Kyhosis and mild scoliosis that I was in so much pain every day and had so many problems (that ended up related to my back and nerve problems) and tests always came back negative for anything and doctors would tell me to my face I was imagining it and there was nothing wrong. After being diagnosed and being told I needed surgery before more serious damage happened (discs slipping and stuff) I wanted to go back to those doctors and say SEE I WAS NOT CRazy! anyways I almost gave up and I am glad I didn't. Because I was diagnosed. 1.5yrs of tests... all on the wrong things. It wasn't that there was nothing wrong with me and it was all in my head-they were testing the wrong stuff. I dont know if my rambling will even help or if it makes little sense but my point is-don't give up and never listen to a doctor if they tell you there is nothing wrong. If I had given up and not been diagnosed-I would be in a wheel chair right now. The thing is-if you have pain there is something wrong. I really hope that you get some relief soon.

[dealsniffer]

Andit-I get told things are odd with me too. My dentist especially lately. My teeth are supposedly very odd and he has never seen some stuff before like what happens in my mouth. same with the rest of my body. oh something weird that stumped my specialist that isn't painful but funny- if I touch a certain spot on my upper stomach, I don't feel sensation there but on a spot on my back. lol so wires are crossed somehow. lol it is like someone is touching my back at the same time I touch my front. lol Lately my joints are causing so much pain and was tested for arthritis but it isn't that so I don't know what is wrong. I have to go for more tests on that I think. Also my left shoulder joint is getting sharp pain now too. but almost like it is in the joint and not a stabbing pain from the outside in. who knows what that is.

[Abby5]

Abby I remember before I was diagnosed with Kyhosis and mild scoliosis that I was in so much pain every day and had so many problems (that ended up related to my back and nerve problems) and tests always came back negative for anything and doctors would tell me to my face I was imagining it and there was nothing wrong. After being diagnosed and being told I needed surgery before more serious damage happened (discs slipping and stuff) I wanted to go back to those doctors and say SEE I WAS NOT CRazy! anyways I almost gave up and I am glad I didn't. Because I was diagnosed. 1.5yrs of tests... all on the wrong things. It wasn't that there was nothing wrong with me and it was all in my head-they were testing the wrong stuff. I dont know if my rambling will even help or if it makes little sense but my point is-don't give up and never listen to a doctor if they tell you there is nothing wrong. If I had given up and not been diagnosed-I would be in a wheel chair right now. The thing is-if you have pain there is something wrong. I really hope that you get some relief soon.

wow ..can i ask how many years/months till you knew what you had? and they could treat you? I am on a year wait to see one dr. now. i have about 6 months to go...

[Abby5]

Some people find that blood thinners help. I have found that one of the up sides to the tinzaparin (LMW heparin) is that it has reduced my migraines. I used to be in the highest category for frequency and severity of migraines. I used to have a migtaine 20 out of 30 days (with treatments). I now have about 10 migraines a month, which is a nice side effect of the medication. As I have said in previous posts I am on the tinzaparin because I have a DVT and PE's and experienced total warfarin failure.

Do your migraines last all day? Where are they? sorry I have never talked to anyone that has had them like this before!My neurologist said I am not in a category for migraines because they never go away

[tidytaurus]

I don't know how anyone could handle having a migraine headache for so long, OMG I have a slight headache and ringing in my ears but its because I am diabetic and when I overdue things my head notifies me. My dh had his face smashed in years ago and lives everyday with a headache and a few times a month it gets so bad but that is from his accident he will not use anything stronger than tylenol, advil or motrin because he was on narcotics and could not function on them. My dr and specialists have no idea what is wrong with me they have me waiting for yet another MRI. Back to the waiting game.

[Angela273]

Do your migraines last all day? Where are they? sorry I have never talked to anyone that has had them like this before!My neurologist said I am not in a category for migraines because they never go away

I am currently 25yrs old. I remember having migraines in elementary school. Doctors are reluctant to diagnose, so I was only diagnosed in high school.

I have cluster migraines. They do go away. They sometimes last for days...other times they do not. Like with many things, they get worse with stress, not eating often enough, not getting as much sleep as your body wants, etc. I do not get oras or throw up because of them. They tend to be in the front of my head. When they are bad or persistent then it will make my eye-lid twitch (ppl can actullay notice it). My forehead will get hot to the touch in certain areas, typically where the pain is the worst.

I have a very high pain tollerance (most doctors agree). I used to find that Advil could be helpful to take a bit of the edge off the pain so that I could function better. A lot of pain medications have blood thinning side effects, which are not options becuase I am on the injection blood thinner for my other medical condition. I have a prescription for T3s becuase of the damage done by the DVT. I go through about 50pills in 1 year (which really isn't very much).

FYI there is a 33% chance that a female will lose her migraines with her first pregnancy, if this happens they may return when she hits menopause.
FYI a lot of people with migrains have larger than normal red blood cells, which can be part of the reason why they are in so much pain with the migraines.

[dealsniffer]

hey Abby. For the most part I lived with back pain for most of my life. I remember in elementary school I thought it was normal. if I crossed my legs too long my back would start to hurt too. it was always manageable for the most part and then around age 12 or so I noticed my back starting to curve and everyone told me to stand up straight and I tried so sooo hard to but it would not work. I thought it was my fault and was slouching so I didn't really bring it up much to doctors. I should have but they would have told me the same thing because sometimes they would tell me I slouched. By highschool it was getting pretty painful and I was starting to have breathing problems and gym was murder when I had to run the track for gym. It is funny because I played soccer but by that time I was having trouble with that too. By about a year after I graduated I just could not play soccer anymore-I apparently had asthma but not really. The doctors didn't understand why I could not take a deep breath and I was having asthma symptoms. It turns out hte curve in my spine was causing problems with my lungs being able to expand properly. that was about 2001 I think. I worked despite the pain. I was always having tests done here and there because I have alwyas had problems keeping weight on and then after highschool I started having unexplained weight loss too and doctors thought I was doing it on purpose because they didn't understand it. I had one year where it got especially bad where in a matter of a week I had lost a few pounds and I was so out of breath that I could no longer even walk across the house let alone stairs. No one understood it. Then in 2004 my back pain and leg pain got so bad I could not make it through full time shifts anymore and I was forced to quit. It got to the point that I could not stand longer than 30min before being in agony. Then I started getting terrible pain in my stomach every time I ate and was on tons of drugs and went through test after test and doctors could not figure it out and called me crazy. Turns out my stomach would spasm out of control when it got food in it. I don't even think there is a name for it. The doctor that figured it out had no idea why it was doing it but it stopped my life. I was always in agony and could not eat and I would have to only eat 3 times a day when I had the pills and I could not eat anything at any other time or the spasms would be horrible. This went on for over a year before that doctor figured it out. She also discovered it had to do with something with my back because of the nerves or something and wrong messages being sent-I don't even know. I thought I would live like this the rest of my life and I got so depressed and even wished I would die because that would be less painful than what I was going through. I was also slowly wasting away because I could not eat much and I kept losing weight. It was horrible. I wished it would be something like cancer that it could have been something they could find so it could be treated and I would know what I was fighting. It got so tiring to get up every day and fight to get through the day and then go to bed and do it all over again. I started to worry it was in my head because doctors told me so. I eventually spent hours at the library researching because the doctors would not help much. Anyways I was told the wait for a specialist would be 1.5yrs and I could not imagine going through it for that much longer and wished I could just die. Then I was at the gym and there happened to be a chiropractor there and it was a saving grace because he was able to work on my back enough over the span of a few months to get me to the point I could get off most of the pills and I could eat again. I still remember the very first meal that I ate and didn't have all the pain. It was euphoria! It was absolutely amazing! Then slowly I was able to eat every meal without all teh pain but that was as far as he could help-he could not straighten my spine-the vertabrae were in wedge shapes because of the kyphosis. He just managed to help me with the stomach stuff which helped so much. Sorry this is so long-I have never shared all this in so much detail before. I managed to get in to see the specialist in a little over a year. he took one look at me pretty much and was like I needed surgery. I was in bad shape. Despite the stomach stuff not causing problems-I still had terrible pain every where else and could not stand very long because of the pain. and my back pain was so bad and I wanted to be able to take a deep breath! I remember the first time after teh surgery when I took my first deep breath instead of a bunch of small shallow breaths. I had always felt as if I could not get enough air because my lungs could not expand properly. ok I will stop now. I went waaaay too much in depth I think. you all probably are annoyed now. but it seemed like there was no hope at all left. I just kept fighting for my family because they would have been devastated to lose me. if it was just me I probably would have given up. I am glad I had my family to keep me going.

[dealsniffer]

my leg hurts so bad. pain is going down my leg. trying to take some tylenol so I can manage to fall asleep.

[Angela273]

aww dealsniffer. I hope tomorrow is a better day for you.

I am personally going to the doctor/hospital tomorrow because my unexplained joint pain has gotten a lot worse. I figured there was not much to be done about it on a weekend...tests, etc. do not get done quickly on weekends. I will check in on here a little later in the week.

[Abby5]

I am currently 25yrs old. I remember having migraines in elementary school. Doctors are reluctant to diagnose, so I was only diagnosed in high school.

I have cluster migraines. They do go away. They sometimes last for days...other times they do not. Like with many things, they get worse with stress, not eating often enough, not getting as much sleep as your body wants, etc. I do not get oras or throw up because of them. They tend to be in the front of my head. When they are bad or persistent then it will make my eye-lid twitch (ppl can actullay notice it). My forehead will get hot to the touch in certain areas, typically where the pain is the worst.

I have a very high pain tollerance (most doctors agree). I used to find that Advil could be helpful to take a bit of the edge off the pain so that I could function better. A lot of pain medications have blood thinning side effects, which are not options becuase I am on the injection blood thinner for my other medical condition. I have a prescription for T3s becuase of the damage done by the DVT. I go through about 50pills in 1 year (which really isn't very much).

FYI there is a 33% chance that a female will lose her migraines with her first pregnancy, if this happens they may return when she hits menopause.
FYI a lot of people with migrains have larger than normal red blood cells, which can be part of the reason why they are in so much pain with the migraines.

Wow thanks! thanks so much for sharing! I have an axe spliting in the centre of my head and a band around the whole head i also get steak knife like ones in my left eye and behind my left skull. I have had two pregnancies-but I got my heachache after both-I got my headache on may 15, 2006-I had never ever had one before-I never go one second without it

[Abby5]

hey Abby. For the most part I lived with back pain for most of my life. I remember in elementary school I thought it was normal. if I crossed my legs too long my back would start to hurt too. it was always manageable for the most part and then around age 12 or so I noticed my back starting to curve and everyone told me to stand up straight and I tried so sooo hard to but it would not work. I thought it was my fault and was slouching so I didn't really bring it up much to doctors. I should have but they would have told me the same thing because sometimes they would tell me I slouched. By highschool it was getting pretty painful and I was starting to have breathing problems and gym was murder when I had to run the track for gym. It is funny because I played soccer but by that time I was having trouble with that too. By about a year after I graduated I just could not play soccer anymore-I apparently had asthma but not really. The doctors didn't understand why I could not take a deep breath and I was having asthma symptoms. It turns out hte curve in my spine was causing problems with my lungs being able to expand properly. that was about 2001 I think. I worked despite the pain. I was always having tests done here and there because I have alwyas had problems keeping weight on and then after highschool I started having unexplained weight loss too and doctors thought I was doing it on purpose because they didn't understand it. I had one year where it got especially bad where in a matter of a week I had lost a few pounds and I was so out of breath that I could no longer even walk across the house let alone stairs. No one understood it. Then in 2004 my back pain and leg pain got so bad I could not make it through full time shifts anymore and I was forced to quit. It got to the point that I could not stand longer than 30min before being in agony. Then I started getting terrible pain in my stomach every time I ate and was on tons of drugs and went through test after test and doctors could not figure it out and called me crazy. Turns out my stomach would spasm out of control when it got food in it. I don't even think there is a name for it. The doctor that figured it out had no idea why it was doing it but it stopped my life. I was always in agony and could not eat and I would have to only eat 3 times a day when I had the pills and I could not eat anything at any other time or the spasms would be horrible. This went on for over a year before that doctor figured it out. She also discovered it had to do with something with my back because of the nerves or something and wrong messages being sent-I don't even know. I thought I would live like this the rest of my life and I got so depressed and even wished I would die because that would be less painful than what I was going through. I was also slowly wasting away because I could not eat much and I kept losing weight. It was horrible. I wished it would be something like cancer that it could have been something they could find so it could be treated and I would know what I was fighting. It got so tiring to get up every day and fight to get through the day and then go to bed and do it all over again. I started to worry it was in my head because doctors told me so. I eventually spent hours at the library researching because the doctors would not help much. Anyways I was told the wait for a specialist would be 1.5yrs and I could not imagine going through it for that much longer and wished I could just die. Then I was at the gym and there happened to be a chiropractor there and it was a saving grace because he was able to work on my back enough over the span of a few months to get me to the point I could get off most of the pills and I could eat again. I still remember the very first meal that I ate and didn't have all the pain. It was euphoria! It was absolutely amazing! Then slowly I was able to eat every meal without all teh pain but that was as far as he could help-he could not straighten my spine-the vertabrae were in wedge shapes because of the kyphosis. He just managed to help me with the stomach stuff which helped so much. Sorry this is so long-I have never shared all this in so much detail before. I managed to get in to see the specialist in a little over a year. he took one look at me pretty much and was like I needed surgery. I was in bad shape. Despite the stomach stuff not causing problems-I still had terrible pain every where else and could not stand very long because of the pain. and my back pain was so bad and I wanted to be able to take a deep breath! I remember the first time after teh surgery when I took my first deep breath instead of a bunch of small shallow breaths. I had always felt as if I could not get enough air because my lungs could not expand properly. ok I will stop now. I went waaaay too much in depth I think. you all probably are annoyed now. but it seemed like there was no hope at all left. I just kept fighting for my family because they would have been devastated to lose me. if it was just me I probably would have given up. I am glad I had my family to keep me going.

Thanks so much for sharing so glad i am not alone..in my struggle to figure out what is going on We are never annoyed

[Angela273]

Long story short. I spent Monday night in the ER. The doctor ran some tests and gave me another prescription for narcotics. No idea what is wrong and what is attacking most of the major joints in my body. I was referred back to my hematologist. My hematologist is currently saying that he will not meet with me because I was not scheduled to have another appointment until Sept. I am going to see my GP tomorrow. I am scheduled to see my vascular surgeon next week Thursday. A few things were eliminated as possible causes but they still do not know what is causing all of this pain. There is never a good time to have pain or medical problems, but I am in university full time. I am writing two 15+page papers. Exams are coming up in two weeks. As we all know, pain does not help your energy, concentration, ability to retain information, etc. I just HURT.