Aa
Pain in the butt
This is just a general kvetch, so feel free to skip past grouchy me.
In any case, for the past couple of weeks I've been trying to pretend that not much is happening symptom-wise, but not succeeding very well. I've had a lot of trouble with my legs-- various paresthesias, and also what seems like muscle problems, the latter being kinda rare for me. It's been more and considerably worse on the right, but sometimes the sides almost seem to switch. How weird is that? So I keep thinking I'm paying too much attention to it and maybe even embellishing what isn't really much. That's not working for me either.
What is really painful, though, at least a 4 on the pain scale, higher at times, is the awful burning I have in the left half of my butt. I've had that before, though not in well over a year. To the touch it feels quite normal, natch. Can't tolerate Neurontin, went off Lyrica last year, as it stopped being very effective and I gained a lot of weight. Did okay, not too much pain, till recently. I have no idea whether this sort of thing constitutes a relapse, because it's basically more of the same, only worse.
I'm also wondering about my reaction to heat. I don't get worse symptoms, I just get HOT in normal temps, and cranky. This past summer I kept my AC going 24/7, which I've never done before, and it cost a bundle, but I couldn't help it. I was miserable and sweaty otherwise. Now in the winter I'm keeping the thermostat set 5 degrees cooler than ever before. Turn the heat off at night, even keep the ceiling fan running when I sleep. What's with this? Even with these changes I sometimes perspire profusely, and it's not change of life. That was over eons ago, and anyway I was one of the lucky ones with virtually no symptoms. These are not flashes, but more states of heat.
If any of you kind souls are still reading, after all this b!tching and moaning, I thank you. I'm making a New Year's res. to keep complaining to a minimum, so I've probaby just used up my allotment for 2010. Happy New Year.
ess
In any case, for the past couple of weeks I've been trying to pretend that not much is happening symptom-wise, but not succeeding very well. I've had a lot of trouble with my legs-- various paresthesias, and also what seems like muscle problems, the latter being kinda rare for me. It's been more and considerably worse on the right, but sometimes the sides almost seem to switch. How weird is that? So I keep thinking I'm paying too much attention to it and maybe even embellishing what isn't really much. That's not working for me either.
What is really painful, though, at least a 4 on the pain scale, higher at times, is the awful burning I have in the left half of my butt. I've had that before, though not in well over a year. To the touch it feels quite normal, natch. Can't tolerate Neurontin, went off Lyrica last year, as it stopped being very effective and I gained a lot of weight. Did okay, not too much pain, till recently. I have no idea whether this sort of thing constitutes a relapse, because it's basically more of the same, only worse.
I'm also wondering about my reaction to heat. I don't get worse symptoms, I just get HOT in normal temps, and cranky. This past summer I kept my AC going 24/7, which I've never done before, and it cost a bundle, but I couldn't help it. I was miserable and sweaty otherwise. Now in the winter I'm keeping the thermostat set 5 degrees cooler than ever before. Turn the heat off at night, even keep the ceiling fan running when I sleep. What's with this? Even with these changes I sometimes perspire profusely, and it's not change of life. That was over eons ago, and anyway I was one of the lucky ones with virtually no symptoms. These are not flashes, but more states of heat.
If any of you kind souls are still reading, after all this b!tching and moaning, I thank you. I'm making a New Year's res. to keep complaining to a minimum, so I've probaby just used up my allotment for 2010. Happy New Year.
ess
Hi, essdipity! Thanks for your response to my long gritching. Here's the thing on my screen name: when I signed up for the forum, my first name had been taken many times. I tried my second name with the same results, and even my last name with the same results. LOL:) Frustrated, I put in my Indian name (American Indian) and I registered that name in Cherokee language spelling, knowing that the system would surely not have anyone registered by that name. My Indian name is two words: Adnvwsti Awvholi. The system wouldn't accept two words, so I deleted the second word and then I was finally allowed to register for the forum. Too late I realized the irony in just using the first word, Adnvwsti, because it means, quite literally, "running"--something I am certainly not doing anymore.
Anyway, there's that explanation. For a nickname, you can just use my first name, which is "Jo". I really appreciate your compassionate response. I do not think that my pain in the butt is greater than yours--not in any way. I don't think you were kvetching at all (great word). I haven't felt what you have with your spine sizzling and frying--that really makes me shiver to think of it. The worst I've had there is the feeling that I can't sit straight up, resting on the point of my tailbone, without a whole lot of pain and burning that radiates up my spine. I must typically lean forward slightly when sitting in my desk chair in order to tolerate the pain for even two hours. But I don't think that matches what you describe as your spine sizzling and frying. That sounds truly horrible.
What you've said about narcotics not helping the pain since this is neuropathic pain just makes total sense. That explains everything there and I don't want those drugs if they don't help. In fact, I never wanted them and most of the time, I continue way too long in the day with pain, resisting taking them, until by the time I do, the pain has really managed to gain momentum. I was warned that I should take them whether I feel pain or not, but I can't seem to make myself remember to do it until I am actually in pain.
But it wasn't the neuro who put me on those meds. It was my old PCP and orthopaedic surgeon who prescribed those meds to me because while they suspected MS, they couldn't dx it until I'd seen the neurosurgeon, so what they tried to do was simply treat my pain and I suppose they really didn't know how to do that since it is neuropathic pain, as you've pointed out.
Unfortunately, when I finally saw the neuro, it was almost too late to do more than dx me. I'd already had all the tests that the other doctors could possibly order and the neuro who saw me was a specialist in MS. The neuro had only to review my brain MRI, which revealed two separate lesions on the brain indicative of MS, and then to review the results of my lumbar tap, which revealed 4 oligloconal bands in the spinal fluid. But even before the neuro reviewed those results, he felt sure that I had MS. The simple vision test he conducted caused him to dx "internuclear ophthalmoplegia", which he said typically occurs in MS patients. He was a very kind, compassionate man who initially stated bluntly that he just didn't believe I had MSl, and then changed his mind entirely after the vision test. I could not remember the three words he told me to remember as he conducted the vision test, but to my own dismay, discovered I could only recall two of the words five minutes after he'd given them to me. It was the first confirmation I had that my mind really was slipping, just as I'd felt it had begun to do. The next week, when he'd actually reviewed the tests, he just said that surely I knew already what they indicated. I did.
The neuro who dx'd me is no longer practicing--he retired in September, on the same day that my husband and I moved to the Dallas area. My husband has not been able to find work yet and we do not have health insurance anymore, as a consequence. In point of fact, in December, we ran out of all resources, so while I have appointments with doctors here to take place this month, I haven’t the money or the insurance to see them.
It is partially for this reason that I'm not on any DMD yet either. The neuro in El Paso wanted me on Rebif. We arrived in Dallas and I saw the neuro here for the first time, two days before our health insurance ended, and that neuro wanted me on Copaxone. I don't know that I have much faith in him, although he treats a number of MS patients, but I did trust the knowledge and ideas of the neuro who diagnosed me with MS last July.
I'm in the Rebif system, but they won't issue me anything until the new neuro gives them the go-ahead. But the neuro here won't get me into the Copaxone system or the Rebif system until I see him again, which I cannot do right now. So there's the long explanation for why I'm not on any DMD yet and am just suffering instead. (However, the new neuro at least confirmed the dx of the neuro who originally dx'd me in July.)
My PCP in my prior city had prescribed Lyrica to me, but I could not tolerate it. I felt as though I was just imploding. Jumpy, irritable, moody, and only taking 75 mg of it morning and night. My husband agreed that I was not myself. I wasn't hallucinating or anything, but I did feel that I didn't know the person I saw in the mirror each morning, so the doctor took me off that medication and put me back on Neurontin, which I tolerate quite well. The dosage was initially 300 mg. morning and night, but when that didn't manage the pain, the dosage was increased again, and again, and then the Vicodin and Darvocet were added to the pain management regimen. The new neuro here looked at my list of prescriptions and just shrugged his shoulders at it.
I have only been able to afford to see a nurse practitioner here in Dallas, and her once only, for refills. She did give me refills of every prescription, but also told me that she didn't feel good about treating me in the long term because I have so many health issues between my heart history and now MS added to the mix. But she will see me until we can get our financial situation and insurance situation stable again. Who knows when that will be, but whenever it happens, it will be grand. With all the stress, I've broken out in a horrible rash all over my back, neck, shoulders, arms, and now it has spread to my upper thighs. Nuts. I wake at night clawing at my face or back, scratching, but the scratching never satisfies the itch, of course, and I'm only left with a blood smear on the sheets and a tiny scab where I've clawed my skin away. Truly silly.
I was prescribed Baclofen as a muscle relaxant, but it did not seem to help me at all, so I am now back on Flexeril, which I'll admit doesn't help much either, but it is way cheaper than Baclofen.
Anyway, thank you for all your input on this. I read another thread today on the forum which rang some bells. Someone had posted something about how the doctors had originally thought "bursitis" symptoms. They said the same thing to me and gave me cortisone shots in both my hip joints last spring. When that didn't help, I was prescribed Lipoderm patches to help with the pain in the hip joints. But they are $200+ per month, so I'm doing without them. It is doubtful that they really help anyway since I don't believe that hip pain is being caused by bursitis. But I do know that I can't lie on either hip. Pressure on the hip joints causes more pain and almost instantly, my foot will go numb or the electrical shocks will begin in my feet.
This web forum has already helped me a lot. In just one day, I've learned a great deal by reading threads and comparing my own symptoms to the symptoms others are complaining of. Knowledge is power, they say. I will try to use that power wisely. Thanks again, essdipity!
Anyway, there's that explanation. For a nickname, you can just use my first name, which is "Jo". I really appreciate your compassionate response. I do not think that my pain in the butt is greater than yours--not in any way. I don't think you were kvetching at all (great word). I haven't felt what you have with your spine sizzling and frying--that really makes me shiver to think of it. The worst I've had there is the feeling that I can't sit straight up, resting on the point of my tailbone, without a whole lot of pain and burning that radiates up my spine. I must typically lean forward slightly when sitting in my desk chair in order to tolerate the pain for even two hours. But I don't think that matches what you describe as your spine sizzling and frying. That sounds truly horrible.
What you've said about narcotics not helping the pain since this is neuropathic pain just makes total sense. That explains everything there and I don't want those drugs if they don't help. In fact, I never wanted them and most of the time, I continue way too long in the day with pain, resisting taking them, until by the time I do, the pain has really managed to gain momentum. I was warned that I should take them whether I feel pain or not, but I can't seem to make myself remember to do it until I am actually in pain.
But it wasn't the neuro who put me on those meds. It was my old PCP and orthopaedic surgeon who prescribed those meds to me because while they suspected MS, they couldn't dx it until I'd seen the neurosurgeon, so what they tried to do was simply treat my pain and I suppose they really didn't know how to do that since it is neuropathic pain, as you've pointed out.
Unfortunately, when I finally saw the neuro, it was almost too late to do more than dx me. I'd already had all the tests that the other doctors could possibly order and the neuro who saw me was a specialist in MS. The neuro had only to review my brain MRI, which revealed two separate lesions on the brain indicative of MS, and then to review the results of my lumbar tap, which revealed 4 oligloconal bands in the spinal fluid. But even before the neuro reviewed those results, he felt sure that I had MS. The simple vision test he conducted caused him to dx "internuclear ophthalmoplegia", which he said typically occurs in MS patients. He was a very kind, compassionate man who initially stated bluntly that he just didn't believe I had MSl, and then changed his mind entirely after the vision test. I could not remember the three words he told me to remember as he conducted the vision test, but to my own dismay, discovered I could only recall two of the words five minutes after he'd given them to me. It was the first confirmation I had that my mind really was slipping, just as I'd felt it had begun to do. The next week, when he'd actually reviewed the tests, he just said that surely I knew already what they indicated. I did.
The neuro who dx'd me is no longer practicing--he retired in September, on the same day that my husband and I moved to the Dallas area. My husband has not been able to find work yet and we do not have health insurance anymore, as a consequence. In point of fact, in December, we ran out of all resources, so while I have appointments with doctors here to take place this month, I haven’t the money or the insurance to see them.
It is partially for this reason that I'm not on any DMD yet either. The neuro in El Paso wanted me on Rebif. We arrived in Dallas and I saw the neuro here for the first time, two days before our health insurance ended, and that neuro wanted me on Copaxone. I don't know that I have much faith in him, although he treats a number of MS patients, but I did trust the knowledge and ideas of the neuro who diagnosed me with MS last July.
I'm in the Rebif system, but they won't issue me anything until the new neuro gives them the go-ahead. But the neuro here won't get me into the Copaxone system or the Rebif system until I see him again, which I cannot do right now. So there's the long explanation for why I'm not on any DMD yet and am just suffering instead. (However, the new neuro at least confirmed the dx of the neuro who originally dx'd me in July.)
My PCP in my prior city had prescribed Lyrica to me, but I could not tolerate it. I felt as though I was just imploding. Jumpy, irritable, moody, and only taking 75 mg of it morning and night. My husband agreed that I was not myself. I wasn't hallucinating or anything, but I did feel that I didn't know the person I saw in the mirror each morning, so the doctor took me off that medication and put me back on Neurontin, which I tolerate quite well. The dosage was initially 300 mg. morning and night, but when that didn't manage the pain, the dosage was increased again, and again, and then the Vicodin and Darvocet were added to the pain management regimen. The new neuro here looked at my list of prescriptions and just shrugged his shoulders at it.
I have only been able to afford to see a nurse practitioner here in Dallas, and her once only, for refills. She did give me refills of every prescription, but also told me that she didn't feel good about treating me in the long term because I have so many health issues between my heart history and now MS added to the mix. But she will see me until we can get our financial situation and insurance situation stable again. Who knows when that will be, but whenever it happens, it will be grand. With all the stress, I've broken out in a horrible rash all over my back, neck, shoulders, arms, and now it has spread to my upper thighs. Nuts. I wake at night clawing at my face or back, scratching, but the scratching never satisfies the itch, of course, and I'm only left with a blood smear on the sheets and a tiny scab where I've clawed my skin away. Truly silly.
I was prescribed Baclofen as a muscle relaxant, but it did not seem to help me at all, so I am now back on Flexeril, which I'll admit doesn't help much either, but it is way cheaper than Baclofen.
Anyway, thank you for all your input on this. I read another thread today on the forum which rang some bells. Someone had posted something about how the doctors had originally thought "bursitis" symptoms. They said the same thing to me and gave me cortisone shots in both my hip joints last spring. When that didn't help, I was prescribed Lipoderm patches to help with the pain in the hip joints. But they are $200+ per month, so I'm doing without them. It is doubtful that they really help anyway since I don't believe that hip pain is being caused by bursitis. But I do know that I can't lie on either hip. Pressure on the hip joints causes more pain and almost instantly, my foot will go numb or the electrical shocks will begin in my feet.
This web forum has already helped me a lot. In just one day, I've learned a great deal by reading threads and comparing my own symptoms to the symptoms others are complaining of. Knowledge is power, they say. I will try to use that power wisely. Thanks again, essdipity!
Hi, I'm here. I don't know how to pronounce your screen name so if you have a nickname, that'd be great.
First, I'm so sorry about your pain. That sounds infinitely worse than mine, and makes me realize that I indeed was just kvetching over a pain in the butt, not torture such as you describe. In the past I've had that, though--a feeling that my spine was actually sizzling and frying, also many other truly terrible sensations.
There are so many things I could say to you, but right now I'll say only a few. The most important thing that comes to mind is that you are not on the right med for pain. Narcotics will do nothing for pain that is neuropathic, which the burning certainly is. No wonder you're not better using them. The 2 chief meds for pain like yours are neurontin and lyrica, neurontin being sort of an earlier version. I know you're on that, but 1800 mg is way lower than the max, which is 3600. Lyrica has been prescribed up to 600 mg, though that is really high.
I can't imagine what's wrong with your neuro, to treat you improperly, then assume you're an addict. The neuropathic meds are nothing to fool with, and have to be tapered up and down, but they are not narcotics.
You know, you really should copy and paste both of your posts into a new thread, which more people are likely to read and comment on. Most members will tell you to find a new neuro who actually knows what he's doing and will treat your symptoms properly. Are you on any muscle relaxants or other drugs? What about a DMD? What have you tried?
Please know that things are at least a bit better than they were, because you now have a whole group of compassionate and knowledgeable friends here. You are not alone.
ess
First, I'm so sorry about your pain. That sounds infinitely worse than mine, and makes me realize that I indeed was just kvetching over a pain in the butt, not torture such as you describe. In the past I've had that, though--a feeling that my spine was actually sizzling and frying, also many other truly terrible sensations.
There are so many things I could say to you, but right now I'll say only a few. The most important thing that comes to mind is that you are not on the right med for pain. Narcotics will do nothing for pain that is neuropathic, which the burning certainly is. No wonder you're not better using them. The 2 chief meds for pain like yours are neurontin and lyrica, neurontin being sort of an earlier version. I know you're on that, but 1800 mg is way lower than the max, which is 3600. Lyrica has been prescribed up to 600 mg, though that is really high.
I can't imagine what's wrong with your neuro, to treat you improperly, then assume you're an addict. The neuropathic meds are nothing to fool with, and have to be tapered up and down, but they are not narcotics.
You know, you really should copy and paste both of your posts into a new thread, which more people are likely to read and comment on. Most members will tell you to find a new neuro who actually knows what he's doing and will treat your symptoms properly. Are you on any muscle relaxants or other drugs? What about a DMD? What have you tried?
Please know that things are at least a bit better than they were, because you now have a whole group of compassionate and knowledgeable friends here. You are not alone.
ess
(continued--dear everyone--please give me your comments and experiences)
Definitely, I'm in a whole new flare-up, with only two or three months between this one and the last one and the pain is just crippling me. I've experienced the pain of childbirth twice, had a massive heart attack followed by double bypass surgery several years ago, and I thought that stuff was painful, but it seems nothing now compared to this pain because this pain just doesn't go away, even for a few moments to let me come up for air.
My own internal thermostat usually tells me I'm freezing. I sat in church last night bundled up in layers of sweaters and a coat, shivering, while everyone else seemed perfectly comfortable and warm. Goodness, we're in Texas--it's just not THAT cold. With this new flare-up, I am having more spasms, electrical shocks and numbness, urinary hesitation, and diarrhea daily, and if not diarrhea, then three or four days of constipation. It seems I've lost all desire for sexual pleasure--I've forgotten what pleasure feels like, and in truth, I don't feel much sensation anymore during sex, unless it's pain, though I try not to let my wonderful husband know it. He tries so hard to meet my needs and be understanding. How can I not at least try to meet his needs?
I fall occasionally. I've tripped on a curb and it sent me sprawling onto the sidewalk and I then could not find the muscular strength to pick myself back up. It was quite embarrassing. I'm in my 50's now, but I was always strong as a young woman, never overweight, someone who walked at such a fast pace most people had to stretch their legs to keep up with me. But now, I pick up my 20 pound grandson and the pain and tremors that generates in my shoulder, arm and back will cause me to set him down quickly. If I squat down, I cannot get back up without holding onto something. That's gone on for about 10 years now. We thought it was related to statins in my cholesterol medication. Now I think it was MS, undiagnosed.
Then there's that crashing fatigue we all of us seem to experience. Every day, I must lie down in the afternoon or fall asleep sitting at my desk (I work from home), but I cannot sleep more than an hour before a muscle spasm wakes me or the burning sensation becomes so bad that I am literally jolted awake. It feels like my skin is being peeled off with fire.
A few weeks ago, I woke one night unable to move or speak. I kept trying to call my husband's name, but no sound would come out. I thought I must be dreaming, but then I heard my old dog get up off her bed, shake and snort and walk around the room before returning to her bed. Several minutes later, I was able to move my right arm and I touched my husband's face. A moment later, I could whisper his name and he immediately asked me if I was alright. I was very frightened and I told him I'd been paralyzed for what seemed to me to be about 20 minutes. He said he thought I'd probably just been having a nightmare, that he'd heard me making some little noises and had been thinking for several minutes that he should wake me. Then I told him about hearing our dog and then he said, "Well, you weren't dreaming then. She did get up and walk around the room. She's the one that woke me up initially and then I just laid here, listening to you, wondering if I should wake you up. I just thought you were having a bad dream. But Honeybear got up about 10 minutes ago, so this wasn't a dream." We both lay there for another hour, wondering about what had just happened, realizing it must have had something to do with this darn MonSter.
Last week, my husband said I woke him the night before with what he thought was probably a seizure. He said my left foot and leg just began to twitch and jerk violently and that went on for several seconds. This incident did not wake me, although it woke him. Now I am wondering how many other incidents like that one have happened that didn't wake him or me. But mostly, I'm wondering if I might be experiencing one of the more progressive forms of MS. I'm not on a cane or walker. I still walk, although I'm very stiff when I first stand up and will limp for a few minutes. Sometimes, my legs feel too heavy to pick up my feet. I dread having to go to the grocery store and will hold onto the cart to help me continue to walk, but I become tired and weak very quickly.
I'll be giving these symptoms to my doctors later this month, but for now, I'd like to hear your two cents, Quix, and everyone else too. Is this perhaps one of the more progressive forms of MS and should I just give up and apply for disability now? I work for two hours and then am useless for three.
Thanks to everyone for your indulgence and I hope some of you can confirm for me that what I'm experiencing is just part of this MS thing.
Definitely, I'm in a whole new flare-up, with only two or three months between this one and the last one and the pain is just crippling me. I've experienced the pain of childbirth twice, had a massive heart attack followed by double bypass surgery several years ago, and I thought that stuff was painful, but it seems nothing now compared to this pain because this pain just doesn't go away, even for a few moments to let me come up for air.
My own internal thermostat usually tells me I'm freezing. I sat in church last night bundled up in layers of sweaters and a coat, shivering, while everyone else seemed perfectly comfortable and warm. Goodness, we're in Texas--it's just not THAT cold. With this new flare-up, I am having more spasms, electrical shocks and numbness, urinary hesitation, and diarrhea daily, and if not diarrhea, then three or four days of constipation. It seems I've lost all desire for sexual pleasure--I've forgotten what pleasure feels like, and in truth, I don't feel much sensation anymore during sex, unless it's pain, though I try not to let my wonderful husband know it. He tries so hard to meet my needs and be understanding. How can I not at least try to meet his needs?
I fall occasionally. I've tripped on a curb and it sent me sprawling onto the sidewalk and I then could not find the muscular strength to pick myself back up. It was quite embarrassing. I'm in my 50's now, but I was always strong as a young woman, never overweight, someone who walked at such a fast pace most people had to stretch their legs to keep up with me. But now, I pick up my 20 pound grandson and the pain and tremors that generates in my shoulder, arm and back will cause me to set him down quickly. If I squat down, I cannot get back up without holding onto something. That's gone on for about 10 years now. We thought it was related to statins in my cholesterol medication. Now I think it was MS, undiagnosed.
Then there's that crashing fatigue we all of us seem to experience. Every day, I must lie down in the afternoon or fall asleep sitting at my desk (I work from home), but I cannot sleep more than an hour before a muscle spasm wakes me or the burning sensation becomes so bad that I am literally jolted awake. It feels like my skin is being peeled off with fire.
A few weeks ago, I woke one night unable to move or speak. I kept trying to call my husband's name, but no sound would come out. I thought I must be dreaming, but then I heard my old dog get up off her bed, shake and snort and walk around the room before returning to her bed. Several minutes later, I was able to move my right arm and I touched my husband's face. A moment later, I could whisper his name and he immediately asked me if I was alright. I was very frightened and I told him I'd been paralyzed for what seemed to me to be about 20 minutes. He said he thought I'd probably just been having a nightmare, that he'd heard me making some little noises and had been thinking for several minutes that he should wake me. Then I told him about hearing our dog and then he said, "Well, you weren't dreaming then. She did get up and walk around the room. She's the one that woke me up initially and then I just laid here, listening to you, wondering if I should wake you up. I just thought you were having a bad dream. But Honeybear got up about 10 minutes ago, so this wasn't a dream." We both lay there for another hour, wondering about what had just happened, realizing it must have had something to do with this darn MonSter.
Last week, my husband said I woke him the night before with what he thought was probably a seizure. He said my left foot and leg just began to twitch and jerk violently and that went on for several seconds. This incident did not wake me, although it woke him. Now I am wondering how many other incidents like that one have happened that didn't wake him or me. But mostly, I'm wondering if I might be experiencing one of the more progressive forms of MS. I'm not on a cane or walker. I still walk, although I'm very stiff when I first stand up and will limp for a few minutes. Sometimes, my legs feel too heavy to pick up my feet. I dread having to go to the grocery store and will hold onto the cart to help me continue to walk, but I become tired and weak very quickly.
I'll be giving these symptoms to my doctors later this month, but for now, I'd like to hear your two cents, Quix, and everyone else too. Is this perhaps one of the more progressive forms of MS and should I just give up and apply for disability now? I work for two hours and then am useless for three.
Thanks to everyone for your indulgence and I hope some of you can confirm for me that what I'm experiencing is just part of this MS thing.
Dear Quix and everyone, and especially essdipity: Thank you for this post. I was actually going to write in today with my own complaints and alarms to try and discover if anyone else is feeling what I'm feeling. Then I read your post about your pain in the butt, essdipity, and realized I didn't need to ask about this particular pain. So many of you here are experiencing it that I feel right at home with my gripes. I thank God for this forum. In the short time I've been a member, I've learned so much and found so much comfort and reaffirmation here.
This is going to be a long post, I think, because I am going to be a big fat whiner today, reveal all and hold nothing back in the hope that some of you will tell me that you are experiencing what I am too. Maybe that will make this current misery easier to endure. Because this will be a long post, I will break it up into two posts, I think. Thank you all in advance for your indulgence and kindness.
My pain in the butt is way off the charts. I feel it at a full 10, as though I am sitting/lying/standing/walking with my rear end parked in a vat of hot battery acid all the time. The burning sensation is always there, but becomes especially acute around 5:00 in the afternoon. It will keep me awake until 3:00 or 4:00 in the morning, just building in intensity until the burn has spread downward to my thighs and upward to my back, neck and shoulders, so that just the touch of the sheets is pure hot torment. When I finally do sleep, it will not be for more than three or four hours, and my sleep is tortured too, filled with nightmares and troubles usually, I'm guessing because I am fighting pain in my sleep.
Last night, it was absolutely unbearable, and I fear it is building to that grand crescendo place where it was during my flare-up that lasted most of the year last year between February and late July, until the doctor finally put me on Prednisone for a couple of weeks to try and "interrupt" it. HOWEVER, first he let me suffer for months, with me telling him it was getting worse all the time and that I felt like a flag twisting in the wind. I begged him to do SOMETHING. In response, he prescribed one Vicodin per day.
Finally, it took my husband accompanying me to the doctor's office. He told the doctor, "My wife is a survivor of child abuse and intimate partner violence, and as a consequence, I'm here to tell you that she absolutely has an extremely high tolerance for pain. You have no idea what she's been through and if she told you, you'd probably cringe hearing it. She still can't even tell ME everything she's endured and I'm her husband! If she's telling me she's in so much pain that she needs me to take off work to drive her to the doctor because she doesn't think she can drive herself, I'm going to listen to her and you should too!"
I was so sick that day that I could not sit up on the examining table and had to lie down. On the way home, I became nauseous and my husband had to pull the car over while I lost the breakfast I hadn't actually eaten all over the street curb. Besides the pain in my rear, I was experiencing electrical shocks all over both feet up to my calves and my feet would go numb. I had waves of electricity on my left arm and shoulder quite often that were painful, plus the double vision and halos, making it hard for me to read, write, or do any work on computer. I was forgetting things, making mistakes in the checkbook, having so much trouble focusing that I'd have to read a sentence five or six times before I could understand its meaning.
And now, it's building to that same place again and I'm just o'deeing on pain medications--something I've never done in my life. I've had way too much fear of addiction and of harming my liver to take even mild painkillers. Vicodin or Ultramm or Percocet would make me terribly nauseous in the past, but no longer. Last night, I was taking Darvocet and Vicodin between 8:00 p.m. and 3:00 a.m. like it was candy, and if I wasn't lying there crying, hoping not to wake my husband, I was moving around between the bedroom and bathroom, shaking and quite literally begging to be taken out of this life, feeling I could not take anymore.
If it continues to build this way, it will be like it was last summer, lasting all day and all night, and there was nothing that could control it. I take 1800 mg of Neurontin a day, but it isn't helping anymore. My doctor has said that perhaps he will have to send me to a pain management specialist and place me on Oxy-Contin or one of the stronger morphine-based drugs, but I do not want to lie there like a vegetable all day. I have things I still feel passionate about and want to accomplish in this lifetime. Between the hours of 7:00 a.m. and 2:00 p.m., I am able to recover some piece of that old passion until the pain begins to build again.
This is going to be a long post, I think, because I am going to be a big fat whiner today, reveal all and hold nothing back in the hope that some of you will tell me that you are experiencing what I am too. Maybe that will make this current misery easier to endure. Because this will be a long post, I will break it up into two posts, I think. Thank you all in advance for your indulgence and kindness.
My pain in the butt is way off the charts. I feel it at a full 10, as though I am sitting/lying/standing/walking with my rear end parked in a vat of hot battery acid all the time. The burning sensation is always there, but becomes especially acute around 5:00 in the afternoon. It will keep me awake until 3:00 or 4:00 in the morning, just building in intensity until the burn has spread downward to my thighs and upward to my back, neck and shoulders, so that just the touch of the sheets is pure hot torment. When I finally do sleep, it will not be for more than three or four hours, and my sleep is tortured too, filled with nightmares and troubles usually, I'm guessing because I am fighting pain in my sleep.
Last night, it was absolutely unbearable, and I fear it is building to that grand crescendo place where it was during my flare-up that lasted most of the year last year between February and late July, until the doctor finally put me on Prednisone for a couple of weeks to try and "interrupt" it. HOWEVER, first he let me suffer for months, with me telling him it was getting worse all the time and that I felt like a flag twisting in the wind. I begged him to do SOMETHING. In response, he prescribed one Vicodin per day.
Finally, it took my husband accompanying me to the doctor's office. He told the doctor, "My wife is a survivor of child abuse and intimate partner violence, and as a consequence, I'm here to tell you that she absolutely has an extremely high tolerance for pain. You have no idea what she's been through and if she told you, you'd probably cringe hearing it. She still can't even tell ME everything she's endured and I'm her husband! If she's telling me she's in so much pain that she needs me to take off work to drive her to the doctor because she doesn't think she can drive herself, I'm going to listen to her and you should too!"
I was so sick that day that I could not sit up on the examining table and had to lie down. On the way home, I became nauseous and my husband had to pull the car over while I lost the breakfast I hadn't actually eaten all over the street curb. Besides the pain in my rear, I was experiencing electrical shocks all over both feet up to my calves and my feet would go numb. I had waves of electricity on my left arm and shoulder quite often that were painful, plus the double vision and halos, making it hard for me to read, write, or do any work on computer. I was forgetting things, making mistakes in the checkbook, having so much trouble focusing that I'd have to read a sentence five or six times before I could understand its meaning.
And now, it's building to that same place again and I'm just o'deeing on pain medications--something I've never done in my life. I've had way too much fear of addiction and of harming my liver to take even mild painkillers. Vicodin or Ultramm or Percocet would make me terribly nauseous in the past, but no longer. Last night, I was taking Darvocet and Vicodin between 8:00 p.m. and 3:00 a.m. like it was candy, and if I wasn't lying there crying, hoping not to wake my husband, I was moving around between the bedroom and bathroom, shaking and quite literally begging to be taken out of this life, feeling I could not take anymore.
If it continues to build this way, it will be like it was last summer, lasting all day and all night, and there was nothing that could control it. I take 1800 mg of Neurontin a day, but it isn't helping anymore. My doctor has said that perhaps he will have to send me to a pain management specialist and place me on Oxy-Contin or one of the stronger morphine-based drugs, but I do not want to lie there like a vegetable all day. I have things I still feel passionate about and want to accomplish in this lifetime. Between the hours of 7:00 a.m. and 2:00 p.m., I am able to recover some piece of that old passion until the pain begins to build again.
Hi, Girl! I'm so sorry to hear your not feeling well! And I'm happy to hear the kvetching. I've missed it.
Take all the good advice and chill out ~~ perhaps I should say 'cool down!'
I get muscle pain, tight cramping in my butt, too, all the way down to my heel sometimes. Zanaflex helps, but it wipes me out. Maybe you could ask your doc about it.
Feel better, pal.
Hugs,
Zil*
Take all the good advice and chill out ~~ perhaps I should say 'cool down!'
I get muscle pain, tight cramping in my butt, too, all the way down to my heel sometimes. Zanaflex helps, but it wipes me out. Maybe you could ask your doc about it.
Feel better, pal.
Hugs,
Zil*
Thank you for all your prayers and good wishes, DJ. I send them right back to you!
I have a lot of weirdnesses with this body, but actually I do very well, all things considered.
I'm never really alone here, because I have the forum, and I have my little furry friend, not to mention other friends and family not so far away. Life is good.
Hugs to you!!
ess
I have a lot of weirdnesses with this body, but actually I do very well, all things considered.
I'm never really alone here, because I have the forum, and I have my little furry friend, not to mention other friends and family not so far away. Life is good.
Hugs to you!!
ess
Hi Sweetie, Boy can I relate to every thing you wrote. Even if I didn't I wouldn't ignore a post from you. HELLO!!!
I hate, Hate, HATE the shocking burning pains in my "Backside" They make me very cranky. They are now being followed by the hugs..totally around the hips.. I feel like I am being squeezed and that makes me feel closed in. I know this all sounds so crazy..
I have also been sweating to the point where I have to change all my clothes. I never use to perspire. This sweating happens for no reason, I can be sleeping, reading, or just sitting, doing nothing.. Next thing I know is I am soaking wet... My Doctors think I am reacting to some of my Meds. But I think the MS is messing with my thermostat.
One minute I am hot the next I am freezing, I don't do well at all when it gets warm. My legs are almost always like ice cold.
Ess. do you ever feel like everything attached to your body is out of control? That's how I have been feeling the past few months.. The MS Usually hits one or two places at a time, but now it fires up all over the place at the same time. It has never been like this before.
I will keep you in my Prayers. I do hope you will feel better soon. does it help to know you aren't alone, that there are others in our group who relate and understand what you are going through. It sure helps me I don't feel quite so a lone..
So I thank you for sharing what you are gong through. Know that even though I don't have any answers I am still here for you 24/7.
Love & Hugs {{{{{~!~}}}}} DJ
I hate, Hate, HATE the shocking burning pains in my "Backside" They make me very cranky. They are now being followed by the hugs..totally around the hips.. I feel like I am being squeezed and that makes me feel closed in. I know this all sounds so crazy..
I have also been sweating to the point where I have to change all my clothes. I never use to perspire. This sweating happens for no reason, I can be sleeping, reading, or just sitting, doing nothing.. Next thing I know is I am soaking wet... My Doctors think I am reacting to some of my Meds. But I think the MS is messing with my thermostat.
One minute I am hot the next I am freezing, I don't do well at all when it gets warm. My legs are almost always like ice cold.
Ess. do you ever feel like everything attached to your body is out of control? That's how I have been feeling the past few months.. The MS Usually hits one or two places at a time, but now it fires up all over the place at the same time. It has never been like this before.
I will keep you in my Prayers. I do hope you will feel better soon. does it help to know you aren't alone, that there are others in our group who relate and understand what you are going through. It sure helps me I don't feel quite so a lone..
So I thank you for sharing what you are gong through. Know that even though I don't have any answers I am still here for you 24/7.
Love & Hugs {{{{{~!~}}}}} DJ
Hi:
I have had problems regulating my body temperature when I am in intolerable to severe pain. I have to go by the thermometer to know what the true temperature is.
And yes, frequently dressing in layers, year round.
This problem began for me around June I believe. My neurologist (who is an expert in MS) had told me he believed the MS was affecting my sense and sensibilities.
So for what it is worth.
I would go so far as to have goosebumps and sweat at the same time. Yet never had a fever.
I hope these symptoms settle down for you really soon.
My neurologist also recently told me that pain generally goes through cycles. So possibly that is all you are having and before you know it the pain in your butt will be gone again.
(And in an attempt to be funny - And here's hoping no others (pains in the butt) will be returning)
Missing_Me
I have had problems regulating my body temperature when I am in intolerable to severe pain. I have to go by the thermometer to know what the true temperature is.
And yes, frequently dressing in layers, year round.
This problem began for me around June I believe. My neurologist (who is an expert in MS) had told me he believed the MS was affecting my sense and sensibilities.
So for what it is worth.
I would go so far as to have goosebumps and sweat at the same time. Yet never had a fever.
I hope these symptoms settle down for you really soon.
My neurologist also recently told me that pain generally goes through cycles. So possibly that is all you are having and before you know it the pain in your butt will be gone again.
(And in an attempt to be funny - And here's hoping no others (pains in the butt) will be returning)
Missing_Me
Ess- I'm sorry to hear of your pain and body thermostat on the fritz. Like Q said you can be a one person BAM committee all you like, we do understand. Besides you rarely complain, don't know how you do it but do admire it.
Q - I'm glad you clarified the fashion rules in your neck of the woods. Here in the Deep South, sandals and wool socks would be laughed at by the majority of the boot wearing rednecks.
Take care Ess and I'm sending good thoughts your way.
Ren
PS Sorry Quix, sending good thoughts to you too...to feel better if you're feeling poorly and also for moderate temps so you don't freeze to death in your sandals.
Q - I'm glad you clarified the fashion rules in your neck of the woods. Here in the Deep South, sandals and wool socks would be laughed at by the majority of the boot wearing rednecks.
Take care Ess and I'm sending good thoughts your way.
Ren
PS Sorry Quix, sending good thoughts to you too...to feel better if you're feeling poorly and also for moderate temps so you don't freeze to death in your sandals.
Granted that I live in a far more temperate climate, I have yet to put on a winter coat. I just go in my tee-shirt. Now in the wind and when the temp was below freezing I did put on a fleece vest. But for just walking in form the parking lot that is fine. I am still in sandals and socks.
Fashion alert - in the Pacific NorthWest sandals (usually Birkenstocks) and wool socks are the typical city footwear, so no snide comment about my fashion sense!
We discover during our really cold snap (temps to the teens) that I don't own a winter coat. ooops!
Q
Fashion alert - in the Pacific NorthWest sandals (usually Birkenstocks) and wool socks are the typical city footwear, so no snide comment about my fashion sense!
We discover during our really cold snap (temps to the teens) that I don't own a winter coat. ooops!
Q
Thanks, Q.
I've been keeping my thermostat at 65. Seems to suit me best. Sometimes when I'm out shopping I have to take my coat off in stores to keep from keeling over from heat.
Have been on Synthroid over 30 years, and get levels checked fairly regularly. Haven't had a dosage change in 15 to 20 years.
I appreciate your okaying my grousing license. Hope you don't live to regret it!
ess
I've been keeping my thermostat at 65. Seems to suit me best. Sometimes when I'm out shopping I have to take my coat off in stores to keep from keeling over from heat.
Have been on Synthroid over 30 years, and get levels checked fairly regularly. Haven't had a dosage change in 15 to 20 years.
I appreciate your okaying my grousing license. Hope you don't live to regret it!
ess
Hi, ess, you have all my sympathy. How crummy to have the pain in the butt.
Sounds like your temp regulation is totally on the fritz. What temp are you comfortable at? I prefer about 67 or 68. Upstairs my M & D keep things right at about 75. they are so unhappy that I don't spend more time there. My poor mom wanders down to our level and just shivers. She has to bundle up like she's going outdoors.
I suppose you have had your thyroid checked.
You can grouse all you like. Save the resolution for those around you who don't really understand. You know that we do.
Q
Sounds like your temp regulation is totally on the fritz. What temp are you comfortable at? I prefer about 67 or 68. Upstairs my M & D keep things right at about 75. they are so unhappy that I don't spend more time there. My poor mom wanders down to our level and just shivers. She has to bundle up like she's going outdoors.
I suppose you have had your thyroid checked.
You can grouse all you like. Save the resolution for those around you who don't really understand. You know that we do.
Q
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