Oh, (((Lisa))), I'm so sorry...I've been in a similar place before (if you read my posts a year or two ago, I basically wrote what you've written)...and I know it's such a horrible, lonely place to be, probably even more so for you because of your sport. For me, it often seemed like nothing anyone could say would help...I didn't want attention or sympathy really, just an end to the constant pain!
I can tell you one thing, though...I know and you know that the pain is NOT just "in your head"...you are not lying and you are not a fraud...you're a wonderful person suffering from something that the doctors don't understand. I know how hard it is to hold on to that thought when doctors keep telling you differently (I once drove several hours to see a pain management specialist, only to be told that I should force myself to jog every day in order to get better, when I could barely walk!)...but please try...you deserve to be believed.
I wish I knew what to tell you about your condition too...just curious, have any of your doctors mentioned the possibility of fibromyalgia to you? Your story sounds so similar to mine...and as far as I know, fibromyalgia is often a diagnosis of exclusion, when all lab tests are normal. It's still hard to treat, and some doctors don't even take it seriously...but at least it is some kind of a diagnosis. I'm definitely not telling you that that would be YOUR diagnosis, of course...I'm just wondering if any doctor has considered it.
I can also relate so much to your experience with antidepressants...at last count, I think I've been on about 14 of them at different times, mostly with little luck and lots of side effects. Fortunately, I did find a combination that worked and that was tolerable, but it took a long time, and I know that some people don't find that combination. Also, I take an herbal supplement that an M.D. with an interest in natural medicine recommended to me, called 5-HTP...it's a serotonin precursor, and I think it's done a lot for my pain and migraines as well.
I guess what I'm trying to say is that there is still hope, as hard as it is to see now...just with the example of fibromyalgia, even though some people don't respond well to prescription medication, there are lots of different supplements and activities that can help. I know it is so frustrating not to even have a diagnosis, though.
I will definitely pray for you and if it's possible, try to send you some extra strength to make it through this. You know that something is wrong with your body, and there is...just because doctors haven't found it doesn't mean that it's "all in your head." My heart aches for you because I know so well how it feels not to be believed, to be in constant pain with no clear way out...I know that you will find a way...you are too wonderful a person to suffer like this.
I think you live in Philly, so there must be big hospitals there. Is there a pain centre associated w/ one of them? We have one in Montreal and there's also one in Toronto. They are multidisciplinary and deal with all kinds of pain, both explicable and inexplicable.
I can so relate to what you are going through. I've had vulvodynia (vulvar pain) since 1990--before it had a name. I went to numerous doctors, psychologists and psychiatrists. No medical reason could be found for my pain, so they all concluded that it had to by psychological. Finally, in '96 I particpated in a pain study at a local teaching hospital, and I was diagnosed with "classic" vulvar vestibulitis. Unfortunately, I had had it for so long that it had gone from occuring only with certain stimuli (intercourse, tight clothes) to being there all the time. I got pregnant right after my diagnosis, so couldn't do the treatment. A couple of years later, I went back to the doc who diagnosed me, and he sent me to have pain mgmt therapy (not much help) and biofeedback (big help). I think what finally worked was biofeedback, stretching and relaxing my pelvic floor muscles, not using "Always" pads or a lot of stuff in my bath, except Aveeno, and therapy for sexual trauma.
Anyway, I know you don't have the same problem, but I just want you to know that you are not alone. I now go through days and even weeks of being pain-free. But it does come back when I'm under stress. As it turns out, there was a psychological component, but it is physical as well--and it took me SIX long years to get someone to believe me.
I know that chronic pain is so depressing, especially when you're young and shouldn't have to go through this! My FIL used to tell me that he had pain too, from arthritis, but he's 75 and has a very unhealthy lifestyle. I got this in my early 20s and always ate well and took care of my body. It's not supposed to happen to people like us, but it does. I will pray for you, that you will have strength to get through this and that you will find a reason for all this...and a way to manage it, if not a cure. I was having a really bad few weeks, but I prayed a lot on Monday and God answered me; I'm feeling a lot better now (although I'm sick!).
No, it's NOT in your head, because I know totally how you feel! I wish that you felt a lot better, and I wish that I had a crystal ball that would let me know what's going on in your body. I do know that you are "healthy" so, I don't know why my friend is always so "sick." Just know that I'm here for you, and that I'm behind you all the way. Keep your head up sweetie! :-)
Rose, your insight is appreciated. Not everyone has been through all what we have. Depression meds, and fibro are not easy things to face. You have, good for you. IBS, isn't easy either. Thank you so much for taking the time to post to me.
I appreciate you sharing your experiences with me. It helps me.
I will email you soon to check on you.
Sending hugs and good thoughts your way. Take care, Lisa-)
(((Nicola))) Thank you so much for sharing you story with me. Wow, we never know how much other people have suffered in the same ways until they tell you. It seems all of us have had a doc tell us that it is all in our head.
Do pain centers need there to be a neurological problem? I am considering that too. Thanks for the suggestion.
I am thinking of getting biofeedback. How do I get that? Who is the practioner that gives you that? Sorry for all the questions.
Thanks for sharing your personal struggle.
Sending hugs and good thoughts your way. Take care, Lisa-)
I'm sure it's real. Have you done a hormone analysis, or a hair analysis? They can find out a lot of things through that. You might be allergic to some strange thing that causes all these symptoms. Don't give up. There is gotta be an answer out there.
((((Ilka))) Thank you for the really great suggestions. I had never thought of those. I will have to address them with my doc. I have had some endocrinology stuff done but not hair analysis.
You guys have been so wonderful and supportive.
Thank you so much for your kind words and input.
Sending hugs and good thoughts your way. Take care, Lisa-)
Please try and feel better. I know what you mean about people not beleiving you when you don't feel well (so frustrating). Please try to hang in there and know that I am here for you and I care. You are a strong person. :o)
It's funny that you ask about neurological problems, b/c I just wrote an article about neuro research for a job interview (turned out I was overqualified and the board wouldn't approve my salary, but I digress...) Anyway, chronic pain is "the" hot new field in neuro research b/c *all* pain comes from the brain, of course, even if it's caused by different illnesses or other reasons. You could do some research on your own and find out if there are neurologists in your area who are interested in this. Do you have a neurological hosptial in your city? We have one in Montreal and they are working on this. I know that Elavil (a precursor to SSRIs) is often used for pain, but I can't take it because I'm nursing. Also, when I did take it just once, it completely knocked me out.
As for the biofeedback, that was done with a physio who specialises in pelvic floor muscle problems. She was recommended by the ob/gyn who diagnosed me with vulvodynia. It just taught me to relax my pelvic floor muscles. Most of the work she does is the opposite, as women w/ incontinence have to strengthen those muscles. If you see a sports medicine doctor, he/she may be able to refer you to someone.
We are very lucky in Montreal b/c we have two med schools (one French, one English), so there's lots of interesting, new research going on here. I saw a sports med doc at another university with no med programme but a well-known physio programme and big on teams.
I hope this can help you some, and that you find a cure soon, if not a reason.
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Oh, (((Lisa))), I'm so sorry...I've been in a similar place before (if you read my posts a year or two ago, I basically wrote what you've written)...and I know it's such a horrible, lonely place to be, probably even more so for you because of your sport. For me, it often seemed like nothing anyone could say would help...I didn't want attention or sympathy really, just an end to the constant pain!
I can tell you one thing, though...I know and you know that the pain is NOT just "in your head"...you are not lying and you are not a fraud...you're a wonderful person suffering from something that the doctors don't understand. I know how hard it is to hold on to that thought when doctors keep telling you differently (I once drove several hours to see a pain management specialist, only to be told that I should force myself to jog every day in order to get better, when I could barely walk!)...but please try...you deserve to be believed.
I wish I knew what to tell you about your condition too...just curious, have any of your doctors mentioned the possibility of fibromyalgia to you? Your story sounds so similar to mine...and as far as I know, fibromyalgia is often a diagnosis of exclusion, when all lab tests are normal. It's still hard to treat, and some doctors don't even take it seriously...but at least it is some kind of a diagnosis. I'm definitely not telling you that that would be YOUR diagnosis, of course...I'm just wondering if any doctor has considered it.
I can also relate so much to your experience with antidepressants...at last count, I think I've been on about 14 of them at different times, mostly with little luck and lots of side effects. Fortunately, I did find a combination that worked and that was tolerable, but it took a long time, and I know that some people don't find that combination. Also, I take an herbal supplement that an M.D. with an interest in natural medicine recommended to me, called 5-HTP...it's a serotonin precursor, and I think it's done a lot for my pain and migraines as well.
I guess what I'm trying to say is that there is still hope, as hard as it is to see now...just with the example of fibromyalgia, even though some people don't respond well to prescription medication, there are lots of different supplements and activities that can help. I know it is so frustrating not to even have a diagnosis, though.
I will definitely pray for you and if it's possible, try to send you some extra strength to make it through this. You know that something is wrong with your body, and there is...just because doctors haven't found it doesn't mean that it's "all in your head." My heart aches for you because I know so well how it feels not to be believed, to be in constant pain with no clear way out...I know that you will find a way...you are too wonderful a person to suffer like this.
Many hugs,
Rose
Edited 12/8/2004 7:47 pm ET ET by rosa444
Dear Lisa,
I think you live in Philly, so there must be big hospitals there. Is there a pain centre associated w/ one of them? We have one in Montreal and there's also one in Toronto. They are multidisciplinary and deal with all kinds of pain, both explicable and inexplicable.
I can so relate to what you are going through. I've had vulvodynia (vulvar pain) since 1990--before it had a name. I went to numerous doctors, psychologists and psychiatrists. No medical reason could be found for my pain, so they all concluded that it had to by psychological. Finally, in '96 I particpated in a pain study at a local teaching hospital, and I was diagnosed with "classic" vulvar vestibulitis. Unfortunately, I had had it for so long that it had gone from occuring only with certain stimuli (intercourse, tight clothes) to being there all the time. I got pregnant right after my diagnosis, so couldn't do the treatment. A couple of years later, I went back to the doc who diagnosed me, and he sent me to have pain mgmt therapy (not much help) and biofeedback (big help). I think what finally worked was biofeedback, stretching and relaxing my pelvic floor muscles, not using "Always" pads or a lot of stuff in my bath, except Aveeno, and therapy for sexual trauma.
Anyway, I know you don't have the same problem, but I just want you to know that you are not alone. I now go through days and even weeks of being pain-free. But it does come back when I'm under stress. As it turns out, there was a psychological component, but it is physical as well--and it took me SIX long years to get someone to believe me.
I know that chronic pain is so depressing, especially when you're young and shouldn't have to go through this! My FIL used to tell me that he had pain too, from arthritis, but he's 75 and has a very unhealthy lifestyle. I got this in my early 20s and always ate well and took care of my body. It's not supposed to happen to people like us, but it does. I will pray for you, that you will have strength to get through this and that you will find a reason for all this...and a way to manage it, if not a cure. I was having a really bad few weeks, but I prayed a lot on Monday and God answered me; I'm feeling a lot better now (although I'm sick!).
Love to you,
Nicola
No, it's NOT in your head, because I know totally how you feel! I wish that you felt a lot better, and I wish that I had a crystal ball that would let me know what's going on in your body. I do know that you are "healthy" so, I don't know why my friend is always so "sick." Just know that I'm here for you, and that I'm behind you all the way. Keep your head up sweetie! :-)
Trix ;-)
Rose, your insight is appreciated. Not everyone has been through all what we have. Depression meds, and fibro are not easy things to face. You have, good for you. IBS, isn't easy either. Thank you so much for taking the time to post to me.
I appreciate you sharing your experiences with me. It helps me.
I will email you soon to check on you.
Sending hugs and good thoughts your way.
Take care,
Lisa-)
Co-CL Depression Support Board
(((Nicola))) Thank you so much for sharing you story with me. Wow, we never know how much other people have suffered in the same ways until they tell you. It seems all of us have had a doc tell us that it is all in our head.
Do pain centers need there to be a neurological problem? I am considering that too. Thanks for the suggestion.
I am thinking of getting biofeedback. How do I get that? Who is the practioner that gives you that? Sorry for all the questions.
Thanks for sharing your personal struggle.
Sending hugs and good thoughts your way.
Take care,
Lisa-)
Co-CL Depression Support Board
(((((Erin))) Thanks so much for your kind words. You are always so supportive of me. I am sure I will see you online soon.
Sending hugs and good thoughts your way.
Take care,
Lisa-)
Co-CL Depression Support Board
I'm sure it's real. Have you done a hormone analysis, or a hair analysis? They can find out a lot of things through that. You might be allergic to some strange thing that causes all these symptoms. Don't give up. There is gotta be an answer out there.
Hugs Ilka
((((Ilka))) Thank you for the really great suggestions. I had never thought of those. I will have to address them with my doc. I have had some endocrinology stuff done but not hair analysis.
You guys have been so wonderful and supportive.
Thank you so much for your kind words and input.
Sending hugs and good thoughts your way.
Take care,
Lisa-)
Co-CL Depression Support Board
((((((HUGS TO YOU LISA))))))
Please try and feel better. I know what you mean about people not beleiving you when you don't feel well (so frustrating). Please try to hang in there and know that I am here for you and I care. You are a strong person. :o)
Donna ((((((HUGS))))))
It's funny that you ask about neurological problems, b/c I just wrote an article about neuro research for a job interview (turned out I was overqualified and the board wouldn't approve my salary, but I digress...) Anyway, chronic pain is "the" hot new field in neuro research b/c *all* pain comes from the brain, of course, even if it's caused by different illnesses or other reasons. You could do some research on your own and find out if there are neurologists in your area who are interested in this. Do you have a neurological hosptial in your city? We have one in Montreal and they are working on this. I know that Elavil (a precursor to SSRIs) is often used for pain, but I can't take it because I'm nursing. Also, when I did take it just once, it completely knocked me out.
As for the biofeedback, that was done with a physio who specialises in pelvic floor muscle problems. She was recommended by the ob/gyn who diagnosed me with vulvodynia. It just taught me to relax my pelvic floor muscles. Most of the work she does is the opposite, as women w/ incontinence have to strengthen those muscles. If you see a sports medicine doctor, he/she may be able to refer you to someone.
We are very lucky in Montreal b/c we have two med schools (one French, one English), so there's lots of interesting, new research going on here. I saw a sports med doc at another university with no med programme but a well-known physio programme and big on teams.
I hope this can help you some, and that you find a cure soon, if not a reason.
Love, Nicola
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