mary8990
02-14-2008, 11:44 PM
Hello everyone - this is my first post, but I have been reading for months. I've had Fibro for about 3 yrs but was just officially diagnosed in 6-07. To be honest I am at my wits end... my Rhuemy has me on effexor 37.5 and that is it. Tried Lyrica but my system could not tolerate it -- my hands and feet swelled so bad and my heart went to racing before I ever got a strong enough dose to benefit me. Have tried many many things.. but like most of you they do not work. My primary doctor had me on Hydro 10mg and I was able to live my life as normal - go to work.... take care of my family - - LIVE! BUT my primary doc has been out of the office for 3 weeks and I of course ran out of meds the beginning of his 1st week out -- so now 3weeks with no pain meds and I'm dying. I thought at first this would be a good test to make sure that I was not addicted -- everyone says "no" to narcotics for long term because you become an addict -- well I have news for them - - I was on them for over 2 years and I did not become an addict just a person that could function in the real world with everyone else. So anyway I was set up to see another primary today and he gives me the same story about the addiction and that he could not and would not give me a script for narcotics. He tells me he is here to help me long term and prescribes elavil to help with the neuro transmitters and fiorcet (a combo of tylenol and caffeine) to take 3 x a day IF needed for pain. IF... IF... I am in his office - -my right arm and leg are twitching like I am in a freak show, my blood pressure is up due to the pain level and I'm crying because I am so desperate for relief and he says IF. He asked me the old pain scale question 0-10 and I say "9" and he says IF. I told him my little experiment of being off the Hydro for 2 weeks (well now 3) with no withdrawal symptoms BUT many symptoms of pain and he said "well it is just too big of a risk". I take this illness very seriously - - I weight train every other day (except this week) I walk every day for an hour (yes, even this week) I watch my weight and diet. stretch every morning and night and try anything and everything these docs throw at me and yet I have NO control over how to control MY constant pain. So much more to say - - but hand is hurting way too much and I have to go to work tomorrow where I can try to answer the phone and be polite and type while being in pain.
Before I go I wanted to say THANK YOU - - I have read many of your posts and it is nice to know that I am not alone... although today I feel pretty alone.
And to ask for your advice - - what do I do now??? I feel like I have exhausted all my options. I live in the Charlotte, NC area and the temp is up and down like a roller coaster so I know that has a lot to do with it.
Thanks in advance for all of your welcomed comments.
Before I go I wanted to say THANK YOU - - I have read many of your posts and it is nice to know that I am not alone... although today I feel pretty alone.
And to ask for your advice - - what do I do now??? I feel like I have exhausted all my options. I live in the Charlotte, NC area and the temp is up and down like a roller coaster so I know that has a lot to do with it.
Thanks in advance for all of your welcomed comments.
Sponsor
shellyj
02-15-2008, 06:31 AM
Try setting an appointment with a neuro or rumie. Have you tried an amptriplyne (spelling)? It's an anti-depressant that also helps with pain. It's worth a shot since lyrica didn't help. Keep trying. I fired my pc that we had for 7 years & have seen 2 neuro before I got the answers & meds I felt comfy with. It's your body- you have to take control & make them take you serious. The thing that I believe worked for me is writing all my sx's down in detail & handed it to neuro & said they may not all be linked- but they are all there. He read it & took it serious. And it was 3 pages long. Anyway, my thoughts are with you & wish you the best of luck. Wish I could help more.
Shelly
Shelly
bluelakelady
02-15-2008, 11:24 AM
welcome to the boards!
perhaps it is time to shop for a new doctor? i went thru 17 of them searching for just the right one. and it was worth it. my doc and i have a relationship that does not include the word IF. we both know i hurt. my doc is an internist. for myself i find she covers more issues together than the specialists i have who only look at one aspect of me. know what i mean?
when shopping ask the receptionist if the doc has patients with fibro. i also ask if they like working for the doc. the answer is in the tone of voice. some are honest and say the doc is a poop or a champ.
remember little sister, you are never alone. all of us are with you. and we are many!!
peace,
bluelakelady
perhaps it is time to shop for a new doctor? i went thru 17 of them searching for just the right one. and it was worth it. my doc and i have a relationship that does not include the word IF. we both know i hurt. my doc is an internist. for myself i find she covers more issues together than the specialists i have who only look at one aspect of me. know what i mean?
when shopping ask the receptionist if the doc has patients with fibro. i also ask if they like working for the doc. the answer is in the tone of voice. some are honest and say the doc is a poop or a champ.
remember little sister, you are never alone. all of us are with you. and we are many!!
peace,
bluelakelady
don'tlikecold
02-15-2008, 03:10 PM
First, I am NOT saying you are not in pain or it isn't that bad. I have had Fibro too for 3 years and take hydro for that and neuropathy.
But there are some things in your statements that confuse me. Have you been taking hydros around the clock for 2 years? You may not be psychologically addicted but could be physically dependent. This would be quite understandable because it would be a very rare person who would not get physically dependent after 2 years. Suddenly stopping this medication can result in rebound pain where the pain is intensified.
Then your comment to the doctor that your pain level is a 9. Do you agree that this is almost the worst pain that could ever be experienced? Again, I am not saying your pain was not that bad. But with various injuries, surgeries, kidney stones, etc, I know I can not work with a pain level at 9. During times when we do have pain, we attempt to convey that to a doctor but sometimes shoot ourselves in the foot. This MAY have made your doctor think the pain was not as bad as you said. With the climate today, doctors are so suspicious of those who request pain meds and some would see this as a red flag.
Please believe that I am not trivializing your pain or behavior. The reason I am commenting is because I see some of the mistakes I have made and I may be completely off track. At first, I was hestitant to take any pain meds at all because the fear of addiction. My doctor explained the difference between addiction and dependency. Then I went to the other extreme and took them lots more often in an attempt to ward off pain. What I found was that my pain kept increasing.
I too have described my pain as being an 8 or 9. Yet recently I developed a dry socket after dental work and that was a 10. I realized that my other pain had not been an 8 or a 9 but probably more of a 6 or 7. I've also found that if I only take the hydros when my pain is severe, it controls the pain better and my pain has decreased. I had thought I had pain 24/7 but actually I had periods of time during the day when I had little pain. It was bearable without pain meds. I also thought I never had a complete day without pain but again I have found that I do have days where I can manage it with other methods. I won't be pain-free but I can still do many of my daily activities.
Perhaps you can sit down with your regular GP and discuss your pain and controlling it more fully. For us, there seems to be no magic pill but rather a combination of methods that may work.
I also live in a climate that can be unstable. This past week, you need the A/C during the day and heat at night. I try to keep my house at a constant tempature and don't spend a lot of time outdoors. I have to do all my exercising indoors as well. That has helped me quite a bit. I also read to see what others have found that has worked for them and like most of us, I will try anything to see if it has any benefits for me.
I wish you well as this is a difficult thing to control. I hope you will take my comments in the manner they were meant. Just something to think about.
But there are some things in your statements that confuse me. Have you been taking hydros around the clock for 2 years? You may not be psychologically addicted but could be physically dependent. This would be quite understandable because it would be a very rare person who would not get physically dependent after 2 years. Suddenly stopping this medication can result in rebound pain where the pain is intensified.
Then your comment to the doctor that your pain level is a 9. Do you agree that this is almost the worst pain that could ever be experienced? Again, I am not saying your pain was not that bad. But with various injuries, surgeries, kidney stones, etc, I know I can not work with a pain level at 9. During times when we do have pain, we attempt to convey that to a doctor but sometimes shoot ourselves in the foot. This MAY have made your doctor think the pain was not as bad as you said. With the climate today, doctors are so suspicious of those who request pain meds and some would see this as a red flag.
Please believe that I am not trivializing your pain or behavior. The reason I am commenting is because I see some of the mistakes I have made and I may be completely off track. At first, I was hestitant to take any pain meds at all because the fear of addiction. My doctor explained the difference between addiction and dependency. Then I went to the other extreme and took them lots more often in an attempt to ward off pain. What I found was that my pain kept increasing.
I too have described my pain as being an 8 or 9. Yet recently I developed a dry socket after dental work and that was a 10. I realized that my other pain had not been an 8 or a 9 but probably more of a 6 or 7. I've also found that if I only take the hydros when my pain is severe, it controls the pain better and my pain has decreased. I had thought I had pain 24/7 but actually I had periods of time during the day when I had little pain. It was bearable without pain meds. I also thought I never had a complete day without pain but again I have found that I do have days where I can manage it with other methods. I won't be pain-free but I can still do many of my daily activities.
Perhaps you can sit down with your regular GP and discuss your pain and controlling it more fully. For us, there seems to be no magic pill but rather a combination of methods that may work.
I also live in a climate that can be unstable. This past week, you need the A/C during the day and heat at night. I try to keep my house at a constant tempature and don't spend a lot of time outdoors. I have to do all my exercising indoors as well. That has helped me quite a bit. I also read to see what others have found that has worked for them and like most of us, I will try anything to see if it has any benefits for me.
I wish you well as this is a difficult thing to control. I hope you will take my comments in the manner they were meant. Just something to think about.
mary8990
02-15-2008, 03:37 PM
First thank all of you for your replies - they are greatly appreciated!
"Don't like it cold".. let me clarify some of your points:
1) I have been on Hydro for 2 yrs off and on during my flares. I have not taken it each and every day for 2 yrs... but I have taken it often. I have no doubt that I dependent but I have been off of it now for 3 weeks with no physical signs of addiction, which was my concern. Yes, dependent.. that was how I got to work and took care of my family. There were day that I was pain free that I went without meds - - actually I was lucky once and went an entire month (this past July when I was turning 40 - so I thought magically I went into remission).
2) I should have better explained the way the doc asked about my pain. He said "with 10 being the worse you've ever felt with this Fibro and 0 being before you had Fibro - what is your pain level" and honestly sitting in his office it was a 9. This is the worse flare I've ever had and I don't understand why my body is having constant spasms as it is. I tell you like I told him... if I could off the right side of my body and still function I would be fine. Yes, my left knee aches as does my left arm and hand - - but not like my right side.
I also did not mention that I have a buldging disc L4 and L5 and some narrowing of the L1 nerves that is pressing on my sciatica running down the right side of my leg but they do not want to operate as the buldge does not seem to be getting any worse and can "normally" be managed with PT. Unfortunately, my FM is making the pain worse - - the doc says if you have anything wrong the FM exaggerates it.
"Don't like it cold".. let me clarify some of your points:
1) I have been on Hydro for 2 yrs off and on during my flares. I have not taken it each and every day for 2 yrs... but I have taken it often. I have no doubt that I dependent but I have been off of it now for 3 weeks with no physical signs of addiction, which was my concern. Yes, dependent.. that was how I got to work and took care of my family. There were day that I was pain free that I went without meds - - actually I was lucky once and went an entire month (this past July when I was turning 40 - so I thought magically I went into remission).
2) I should have better explained the way the doc asked about my pain. He said "with 10 being the worse you've ever felt with this Fibro and 0 being before you had Fibro - what is your pain level" and honestly sitting in his office it was a 9. This is the worse flare I've ever had and I don't understand why my body is having constant spasms as it is. I tell you like I told him... if I could off the right side of my body and still function I would be fine. Yes, my left knee aches as does my left arm and hand - - but not like my right side.
I also did not mention that I have a buldging disc L4 and L5 and some narrowing of the L1 nerves that is pressing on my sciatica running down the right side of my leg but they do not want to operate as the buldge does not seem to be getting any worse and can "normally" be managed with PT. Unfortunately, my FM is making the pain worse - - the doc says if you have anything wrong the FM exaggerates it.
don'tlikecold
02-15-2008, 08:37 PM
Aha! That explains it better! Sorry for the misconfusion. I also have spinal problems that cause my neuropathy and aggravate the Fibro. It has gotten to the point where I no longer even bring up the Fibro because I don't get taken seriously. I have better luck getting treated for the two others.
So maybe you would have better luck with a neuro? Because maybe your pain is not actually from Fibro symptoms but is coming from your other problems? It's really hard to tell what is what when you have several things going on but you probably know your body better than anyone.
So maybe you would have better luck with a neuro? Because maybe your pain is not actually from Fibro symptoms but is coming from your other problems? It's really hard to tell what is what when you have several things going on but you probably know your body better than anyone.
mary8990
02-15-2008, 10:16 PM
Well yeah I have considered just saying it's back... sciatica etc etc.. but that does really explain why my elbow feels like it has a knife sticking in it and the obvious fact that my entire arm is twitching like I have Parkinsons.... I don't know what to do.... but I'm desperate for relief! I hope you have success in your pursuit for happiness... or at least a "normal" life.
music47
02-16-2008, 12:33 AM
Mary
I'm sorry you are suffering in so much pain. I've had fibro for years.I take 100mg of Amitripiline every night at bedtime for depression,sleep and fibro and it really helps. Take care and my prayers are with you.
Sincerely Nadine:angel:
I'm sorry you are suffering in so much pain. I've had fibro for years.I take 100mg of Amitripiline every night at bedtime for depression,sleep and fibro and it really helps. Take care and my prayers are with you.
Sincerely Nadine:angel:
sweetjerseygirl
02-16-2008, 01:03 AM
Sciatic pain or at least the sciatic i have suffered from in the past can easily be reported by a nine or ten and once again i believe everyones is different but the same. I dreaded whenever that would attack me, feeling near tears, repeating " oh no, not now!" several times and praying "please stop" is pretty severe. After being in a car accident one time they asked my pain level and of course i said a ten, because it had just happened, just like when your pain is happening, your miserable and are there for some type of relief, of course your going to say that, so dont be hard on yourself or feel bad about it, it is what it is at the moment !
I have told a few people on this site, please dont give up on yourself and find what works for you. Its by far not an easy road, especially after suffering so much. Its so easy to get discusted, frustrated and wanting to give up (but not really wanting to give up) We just get discusted by how much we have to go thru. some of us have been through a lot with both Doctors, meds that dont help us (but do wonders for other sufferes ) and with family members that cannot understand but we must hang in there and take care of ourselves.
There are so many wonderful people on this site who will share their stories and listen to you, so keep asking, reading and listening, if only for someone to talk to at times, we're here for you as we have been for one another. I'm new to the site also but its kept my sanity in tact lately because i was experiencing some real flair ups and my hubby wasnt realizing how very painful they were becoming for me.
So the kind folks on this site really got me thru a few rotten days. If we or me can help in anyway just ask and if we can we will. No your not alone with this awful condition. sometimes the pains that rip through my body feel like a razor blades, very quickly ripping through different parts, at anytime and hardly ever in the same area and it makes the body jerk in those spots, tho it happens quickly, it hurts a lot , it just makes that part of the area flinch. So hang in there for now and keep your fingers crossed that your pain will lessen with time and patience to do what you have to for now.
I have told a few people on this site, please dont give up on yourself and find what works for you. Its by far not an easy road, especially after suffering so much. Its so easy to get discusted, frustrated and wanting to give up (but not really wanting to give up) We just get discusted by how much we have to go thru. some of us have been through a lot with both Doctors, meds that dont help us (but do wonders for other sufferes ) and with family members that cannot understand but we must hang in there and take care of ourselves.
There are so many wonderful people on this site who will share their stories and listen to you, so keep asking, reading and listening, if only for someone to talk to at times, we're here for you as we have been for one another. I'm new to the site also but its kept my sanity in tact lately because i was experiencing some real flair ups and my hubby wasnt realizing how very painful they were becoming for me.
So the kind folks on this site really got me thru a few rotten days. If we or me can help in anyway just ask and if we can we will. No your not alone with this awful condition. sometimes the pains that rip through my body feel like a razor blades, very quickly ripping through different parts, at anytime and hardly ever in the same area and it makes the body jerk in those spots, tho it happens quickly, it hurts a lot , it just makes that part of the area flinch. So hang in there for now and keep your fingers crossed that your pain will lessen with time and patience to do what you have to for now.
kirstee
02-16-2008, 06:06 PM
I'm with Blue Lake - doff the dud and find another doctor that will work with you. Just like Blue Lake, it took me awhile to find the great guy that has become my FMS doctor (I live in Colorado - he practices in California - I still see him after moving from California), but it was a worthwhile pursuit. Don't put up with this and stand up for yourself! Having the further complications of a spinal injury must make this very difficult, let alone having someone say "if" to you. Huggies and healing thoughts are being sent to you.
Blessings,
Kirstee
Blessings,
Kirstee
mary8990
02-17-2008, 12:06 AM
Thanks to all of you for your replies... just knowing that I am not alone has meant so much to me!!! You are all angels:angel: and an answer to my prayers.