shokrokmom
06-19-2003, 07:28 PM
Hello all,
A while back I posted all my symptoms somewhere on this site, so I won't bore you with all the details.
My pain started 5 years ago in my legs only, I just woke up one morning, feeling fine when I went to bed the night before, and my hubby had to pull me out of bed, I could not get up. Over the past 5 years the pain has spread to my arms, hands, back and neck. I also have IBS and Trigeminal Neuralgia. I just went to Indianapolis to the IU Medical Center, living 100 miles away it was a nightmare of a trip.
I spent a total of 10 minutes in a neurologists office(a 100 mile trip for a whole 10 minutes)!
I had an MRI of the neck ONLY 3 years ago, and that is what they wanted me to bring with me.
Last year, I had some blood work done and I came back with a positive rheumatoid factor, abnormal ASO screen, and abnormal(high) CRP. This neurologist I seen this morning tapped on my back, listened to my heart, looked at my MRI from 3 yrs ago and said I have Fibro. I have NO trigger point tenderness, and all these abnormal blood tests. I asked her if she should run some more tests and she said she didn't feel it was neccessary, then sent me on my way. Whatever my affliction may be, it is crippling me. I can no longer write, I have to type everything, most of the time I can barely walk. I don't know what else it could be, but I do not think it is fibro. A few different docs have tested my thyroid, normal, of course, but they all say that it is enlarged, then they leave it at that.
The last thing the neurologist said before leaving the room, is that she was going to send a letter to my doctor saying I need to go to a psychiatrist for depression and get on more meds. I said to her "If you had been sick for 5 years and everyone telling you they didn't know why and not really doing alot to find out, wouldn't you get a little depressed too?" she just looked at me, told me to have a good day and left.
I am so angry, I am going to send her a letter. I feel as though I wasted my time, and hers.
Any and all feedback will be welcomed and appreciated.
Thanks all,
Michelle
[This message has been edited by shokrokmom (edited 06-19-2003).]
A while back I posted all my symptoms somewhere on this site, so I won't bore you with all the details.
My pain started 5 years ago in my legs only, I just woke up one morning, feeling fine when I went to bed the night before, and my hubby had to pull me out of bed, I could not get up. Over the past 5 years the pain has spread to my arms, hands, back and neck. I also have IBS and Trigeminal Neuralgia. I just went to Indianapolis to the IU Medical Center, living 100 miles away it was a nightmare of a trip.
I spent a total of 10 minutes in a neurologists office(a 100 mile trip for a whole 10 minutes)!
I had an MRI of the neck ONLY 3 years ago, and that is what they wanted me to bring with me.
Last year, I had some blood work done and I came back with a positive rheumatoid factor, abnormal ASO screen, and abnormal(high) CRP. This neurologist I seen this morning tapped on my back, listened to my heart, looked at my MRI from 3 yrs ago and said I have Fibro. I have NO trigger point tenderness, and all these abnormal blood tests. I asked her if she should run some more tests and she said she didn't feel it was neccessary, then sent me on my way. Whatever my affliction may be, it is crippling me. I can no longer write, I have to type everything, most of the time I can barely walk. I don't know what else it could be, but I do not think it is fibro. A few different docs have tested my thyroid, normal, of course, but they all say that it is enlarged, then they leave it at that.
The last thing the neurologist said before leaving the room, is that she was going to send a letter to my doctor saying I need to go to a psychiatrist for depression and get on more meds. I said to her "If you had been sick for 5 years and everyone telling you they didn't know why and not really doing alot to find out, wouldn't you get a little depressed too?" she just looked at me, told me to have a good day and left.
I am so angry, I am going to send her a letter. I feel as though I wasted my time, and hers.
Any and all feedback will be welcomed and appreciated.
Thanks all,
Michelle
[This message has been edited by shokrokmom (edited 06-19-2003).]
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Creeping Crud
06-19-2003, 08:17 PM
Hey Michelle,
It sounds to me like your medical care has been severely mishandled.. All too often, diagnosing a patient with fibromyalgia is a way of dismissing them because there's nothing that doctors can really do about it (except prescribe medications to help control the symptoms).. Heaven forbid that they have to take a few extra minutes out of their precious time to find out what's really wrong with you and give you a proper diagnosis..
You have far too many abnormal blood tests to be dismissed like that.. Have you seen or been referred to a rheumatologist? I have a great one in Carmel, IN that is sensitive, caring and thinks that most neurologists are about the most incompetent breed of doctors on the planet.. I know it's another long trip and all, but both of my visits with him lasted at least an hour & he honestly listened to all of my concerns (which is more than I can say for most of the other doctors I've been to)..
I would definitely seek a second or third opinion if I were you.. There are far too many doctors with god complexes who abuse their patients emotionally and verbally.. I wouldn't curse chronic pain on my worst enemy, but I would love to see how some of the more insensitive doctors out there would react if they were faced with the same affliction.. I know that's cruel, but at least I'm being honest..
In any event, if you need a good rheumatologist and you're willing to travel to Carmel (which is north of Indianapolis), let me know.. I would imagine that he'd spend a lot more time with you & wouldn't automatically assume that your neurologist was correct in her diagnosis (because he's pretty darn jaded & I love him for that).. He's also a really, really nice guy..
Take Care,
Melanie
It sounds to me like your medical care has been severely mishandled.. All too often, diagnosing a patient with fibromyalgia is a way of dismissing them because there's nothing that doctors can really do about it (except prescribe medications to help control the symptoms).. Heaven forbid that they have to take a few extra minutes out of their precious time to find out what's really wrong with you and give you a proper diagnosis..
You have far too many abnormal blood tests to be dismissed like that.. Have you seen or been referred to a rheumatologist? I have a great one in Carmel, IN that is sensitive, caring and thinks that most neurologists are about the most incompetent breed of doctors on the planet.. I know it's another long trip and all, but both of my visits with him lasted at least an hour & he honestly listened to all of my concerns (which is more than I can say for most of the other doctors I've been to)..
I would definitely seek a second or third opinion if I were you.. There are far too many doctors with god complexes who abuse their patients emotionally and verbally.. I wouldn't curse chronic pain on my worst enemy, but I would love to see how some of the more insensitive doctors out there would react if they were faced with the same affliction.. I know that's cruel, but at least I'm being honest..
In any event, if you need a good rheumatologist and you're willing to travel to Carmel (which is north of Indianapolis), let me know.. I would imagine that he'd spend a lot more time with you & wouldn't automatically assume that your neurologist was correct in her diagnosis (because he's pretty darn jaded & I love him for that).. He's also a really, really nice guy..
Take Care,
Melanie
shokrokmom
06-20-2003, 01:10 AM
Hi Melanie,
Thanks for responding to my post.
I have, indeed been to a rheumy, he was an arrogant ass. He suggested to my doctor that he take me off of my pain med(T4) because it was too strong and too addictive. I told him that my doc originally wanted me on Vicodin, but I refuse to take it. Tylenol 4 is the only thing I have found, so far, that takes the edge off my pain so I can go on living. The rheumy seen me one time, didn't want to do a follow up and said it was not neccessary to see me again. He also told me just because I had a positive high reading on my rheumatoid factor test, didn't mean I have rheumatoid arthritis, so he felt I didn't need to be seing him. See, here is the problem, I am on Medicaid, thank heavens for that or I wouldn't be able to see any doctor. I feel I am treated much differently because of it. I had originally asked my doc to send me to the Cleveland Clinic(Mayo doesn't take Indiana Medicaid but Clevend does) we found out that because of Medicaid, we have to exhaust all our options in Indiana first before they will approve Cleveland Clinic. My family doc and I have discussed the possibility of MS and/or Lupus. Nobody seems to want to do an MRI of the brain to find if there are lesions or not. I am quite angry about all of this, as well as disgusted.
Any other ideas are certainly welcome.
Thanks again,
Michelle
Thanks for responding to my post.
I have, indeed been to a rheumy, he was an arrogant ass. He suggested to my doctor that he take me off of my pain med(T4) because it was too strong and too addictive. I told him that my doc originally wanted me on Vicodin, but I refuse to take it. Tylenol 4 is the only thing I have found, so far, that takes the edge off my pain so I can go on living. The rheumy seen me one time, didn't want to do a follow up and said it was not neccessary to see me again. He also told me just because I had a positive high reading on my rheumatoid factor test, didn't mean I have rheumatoid arthritis, so he felt I didn't need to be seing him. See, here is the problem, I am on Medicaid, thank heavens for that or I wouldn't be able to see any doctor. I feel I am treated much differently because of it. I had originally asked my doc to send me to the Cleveland Clinic(Mayo doesn't take Indiana Medicaid but Clevend does) we found out that because of Medicaid, we have to exhaust all our options in Indiana first before they will approve Cleveland Clinic. My family doc and I have discussed the possibility of MS and/or Lupus. Nobody seems to want to do an MRI of the brain to find if there are lesions or not. I am quite angry about all of this, as well as disgusted.
Any other ideas are certainly welcome.
Thanks again,
Michelle
Creeping Crud
06-20-2003, 09:17 AM
Hi again, Michelle,
I can understand your frustration.. If you think being on Medicaid makes doctors treat you differently, try having no insurance at all.. That's the situation I've been in throughout my illness and consequent fibromyalgia diagnosis & when doctors don't have an insurance company to overcharge, it seems like a person's medical care definitely suffers for it..
The only reason I suggested seeing a rheumatologist again is because your neurologist diagnosed you with fibromyalgia.. Since rheumatologists specialize in FMS and other pain related disorders, finding the right one might help.. If nothing else, they could either confirm or refute your neurologist's diagnosis & (whether her diagnosis was accurate or not), it would force them to take notice of you rather than turning you away.. There's nothing wrong with getting a second opinion from a more educated source.. There are some bad ones out there though.. I know because I've seen plenty of them, but if your pain is affecting your quality of life something needs to be done about that..
I know that prescribing addictive substances is controversial in some cases, but when a person is in chronic pain the rules change.. Most *good* rheumatologists seem to understand that.. Mine wanted to put me on a narcotic pain reliever, but I told him I wasn't interested.. If I'm going to be in pain for the rest of my life (I'm 28), I'd rather wait until I need something stronger if I can get by with nonaddictive pain relief for now..
Is there any way that your family doc could run the RA and ANA bloodwork again? I'm not sure that any of it will help, but it probably wouldn't hurt either.. I wish a few other people on this board would respond because they might have some suggestions that I don't, but quite a few of us must be feeling icky right now (I know that I am)..
Take Care,
Melanie
I can understand your frustration.. If you think being on Medicaid makes doctors treat you differently, try having no insurance at all.. That's the situation I've been in throughout my illness and consequent fibromyalgia diagnosis & when doctors don't have an insurance company to overcharge, it seems like a person's medical care definitely suffers for it..
The only reason I suggested seeing a rheumatologist again is because your neurologist diagnosed you with fibromyalgia.. Since rheumatologists specialize in FMS and other pain related disorders, finding the right one might help.. If nothing else, they could either confirm or refute your neurologist's diagnosis & (whether her diagnosis was accurate or not), it would force them to take notice of you rather than turning you away.. There's nothing wrong with getting a second opinion from a more educated source.. There are some bad ones out there though.. I know because I've seen plenty of them, but if your pain is affecting your quality of life something needs to be done about that..
I know that prescribing addictive substances is controversial in some cases, but when a person is in chronic pain the rules change.. Most *good* rheumatologists seem to understand that.. Mine wanted to put me on a narcotic pain reliever, but I told him I wasn't interested.. If I'm going to be in pain for the rest of my life (I'm 28), I'd rather wait until I need something stronger if I can get by with nonaddictive pain relief for now..
Is there any way that your family doc could run the RA and ANA bloodwork again? I'm not sure that any of it will help, but it probably wouldn't hurt either.. I wish a few other people on this board would respond because they might have some suggestions that I don't, but quite a few of us must be feeling icky right now (I know that I am)..
Take Care,
Melanie
MistyMisty
06-20-2003, 07:06 PM
Call your state Medicaid office and tell them you need a second opinion. I beleive you can choose the type of doctor. Decide before hand just who you want to see. Tell the Medicaid person what is going on and why you feel as you do. (The phone call is taped by the way, so be nice, be firm, be truthful.)
I would be looking for a good Internist at this point.
Write down a list of tests you wish to have. A complete thyroid blood test and thyroid scan or ultrasound on the thyroid should be included in your list. Get another set of blood tests. Be checked for Lymes disease, RA again, yeast infections, Ebstein-Barr, viral infections, and bacterial infections.
A knowledable Internist does more testing than a General Practicioner (GP) or even a rheumatoidologist.
You have the right to have all these tests done if you have FULL medicaid coverage.
I have gone into the doctor's office and really let off some stream....and I didn't care who heard me. I used to cry and become confused and let myself be intimidated. Not anymore! I try to be nice but firm. That is so hard to do when you feel so ill, and people think you are not sick!
The past four years I have been making lists of things I want to discuss or tests I want done. I am the patient, it is my body, and nobody dismisses me anymore. I have even said, "I'm not leaving" until I get whatever it is I want done, done. Hope that makes sense to you.
I make sure the nurse writes in my chart my list of complaints too, BEFORE I see the doctor.
Good luck. Hope this helps. MistyMisty
I would be looking for a good Internist at this point.
Write down a list of tests you wish to have. A complete thyroid blood test and thyroid scan or ultrasound on the thyroid should be included in your list. Get another set of blood tests. Be checked for Lymes disease, RA again, yeast infections, Ebstein-Barr, viral infections, and bacterial infections.
A knowledable Internist does more testing than a General Practicioner (GP) or even a rheumatoidologist.
You have the right to have all these tests done if you have FULL medicaid coverage.
I have gone into the doctor's office and really let off some stream....and I didn't care who heard me. I used to cry and become confused and let myself be intimidated. Not anymore! I try to be nice but firm. That is so hard to do when you feel so ill, and people think you are not sick!
The past four years I have been making lists of things I want to discuss or tests I want done. I am the patient, it is my body, and nobody dismisses me anymore. I have even said, "I'm not leaving" until I get whatever it is I want done, done. Hope that makes sense to you.
I make sure the nurse writes in my chart my list of complaints too, BEFORE I see the doctor.
Good luck. Hope this helps. MistyMisty
shokrokmom
06-21-2003, 12:20 AM
Hello everyone,
Melanie, I am sorry to hear that you have no insurance, with being afflicted with chronic pain, that must really be Hell.
As you can understand, I am very leary of rheumatologists, especially after seeing the one I did. But at this point, I am almost ready to give ANYTHING a try.
The neurologist in Indy did say she wants me on more meds for chronic pain, ie: Neurontin(sp?) and others I can't remember the name of. Of course, she didn't bother to prescribe anything for me.
I can't wait to read the letter to my doc from her. LOL
As far as pain meds go, my doc started me on Darvocet and T3, going back and forth between the two, then at one of my visits with him about 6 months ago, he asked me how it was working, I told him I had to take 2 just to take the edge off so I could get to sleep at night. He decided to bump it up to T4 then. they work ok to take the edge off the pain, I only take them 1 in the morning and 2 at bedtime. Of course, I am still suffering but I am too afraid of looking like a pill seeker or a drug addict, plus, I can't be "out of it" because I have a very hyper "high function, mildly autistic" 3 yr old. So, for him, I have to have my wits about me.
Misty, Thank you for replying to my post also. I do intend on going somewhere else for a 2nd(3rd, 4th, 50th) opinion, I don't feel that I have to accept the dismissive answers that I am getting. I do, indeed, have full medicaid, so that does help a little(as long as the doc I am to see doesn't treat me like a piece of crap because of it)
I get very nervous when I have to see anyone, even my regular doc. I guess I am just so afraid that no one will believe me, or think I am faking, or something to that effect.So, I get easily confused by these doctors. Anyway, it has taken me about 1 1/2 hours just to type this out, so I am going to stop now.
Thanks again for the replies. Best wishes to all.
Michelle
Melanie, I am sorry to hear that you have no insurance, with being afflicted with chronic pain, that must really be Hell.
As you can understand, I am very leary of rheumatologists, especially after seeing the one I did. But at this point, I am almost ready to give ANYTHING a try.
The neurologist in Indy did say she wants me on more meds for chronic pain, ie: Neurontin(sp?) and others I can't remember the name of. Of course, she didn't bother to prescribe anything for me.
I can't wait to read the letter to my doc from her. LOL
As far as pain meds go, my doc started me on Darvocet and T3, going back and forth between the two, then at one of my visits with him about 6 months ago, he asked me how it was working, I told him I had to take 2 just to take the edge off so I could get to sleep at night. He decided to bump it up to T4 then. they work ok to take the edge off the pain, I only take them 1 in the morning and 2 at bedtime. Of course, I am still suffering but I am too afraid of looking like a pill seeker or a drug addict, plus, I can't be "out of it" because I have a very hyper "high function, mildly autistic" 3 yr old. So, for him, I have to have my wits about me.
Misty, Thank you for replying to my post also. I do intend on going somewhere else for a 2nd(3rd, 4th, 50th) opinion, I don't feel that I have to accept the dismissive answers that I am getting. I do, indeed, have full medicaid, so that does help a little(as long as the doc I am to see doesn't treat me like a piece of crap because of it)
I get very nervous when I have to see anyone, even my regular doc. I guess I am just so afraid that no one will believe me, or think I am faking, or something to that effect.So, I get easily confused by these doctors. Anyway, it has taken me about 1 1/2 hours just to type this out, so I am going to stop now.
Thanks again for the replies. Best wishes to all.
Michelle
lovemythreeguys2002
06-21-2003, 01:34 AM
If your thyroid is enlarged, SOMETHING is going on...it is either under attack or it cannot function well.
Joint and muscle pain is a major symptom of thyroid disease. I would demand a full blood panel for thyroid including checking for thyroid anti-bodies....very important!
Joint and muscle pain is a major symptom of thyroid disease. I would demand a full blood panel for thyroid including checking for thyroid anti-bodies....very important!
shokrokmom
06-22-2003, 02:32 PM
Hello all,
I just wanted to add something, a newer symptom, of course. I didn't really think it was related but it doesn't seem to be going away. About 2 weeks ago, I broke out in a rash across the top of my back and my forearms. I thought it was a heat rash but it won't go away. I didn't think about it being a symptom until now because it just hangs on. I have never had a heat rash last THAT long.
Anyway, I don't know if it's related or not, just thought I would mention it.
I also wanted to add something else. I see people on the board saying they are having a "flare up". I have been having a "flare up" for 5 years. Mine don't seem to go away, or even die down at all. I have been in constant pain for 5 years with no relief at all. Of course, some days are worse than other, ie: cold, wet, rainy, humid, etc...
But every day is major pain. That is another reason I feel that I do not have Fibro. I keep hearing about flare ups, which would mean to me that there are periods of time when they feel better, I never feel better, as a matter of fact, over the years, it has gotten progressively worse. I am in 100 times more pain then when all this started 5 years ago. None of this is making any sense to me, it is very confusing.
Ok, I think I am done ranting, for the moment.
Have a good day all (or at least try)
Michelle
[This message has been edited by shokrokmom (edited 06-22-2003).]
I just wanted to add something, a newer symptom, of course. I didn't really think it was related but it doesn't seem to be going away. About 2 weeks ago, I broke out in a rash across the top of my back and my forearms. I thought it was a heat rash but it won't go away. I didn't think about it being a symptom until now because it just hangs on. I have never had a heat rash last THAT long.
Anyway, I don't know if it's related or not, just thought I would mention it.
I also wanted to add something else. I see people on the board saying they are having a "flare up". I have been having a "flare up" for 5 years. Mine don't seem to go away, or even die down at all. I have been in constant pain for 5 years with no relief at all. Of course, some days are worse than other, ie: cold, wet, rainy, humid, etc...
But every day is major pain. That is another reason I feel that I do not have Fibro. I keep hearing about flare ups, which would mean to me that there are periods of time when they feel better, I never feel better, as a matter of fact, over the years, it has gotten progressively worse. I am in 100 times more pain then when all this started 5 years ago. None of this is making any sense to me, it is very confusing.
Ok, I think I am done ranting, for the moment.
Have a good day all (or at least try)
Michelle
[This message has been edited by shokrokmom (edited 06-22-2003).]
Creeping Crud
06-22-2003, 04:50 PM
Hey Michelle,
First let me explain the concept of flares to you.. We experience symptoms all the time, but flares are basically when our body completely rebels and things get unbearable.. I wouldn't even know the definition of a flare unless I'd gotten my symptoms somewhat under control with medication, diet and exercise..
For several years, it was nothing but a constant flare for me.. There were no ups and downs, there was just badness, badness and more badness.. (Thus my user name Creeping Crud..) Before my diagnosis and consequent lifestyle changes and medications, I was so sick that I lost everything - my home, my fiance', my independence, my health, my dignity, my self worth - it was a living hell..
If I were you, I'd bring your rash up to your doctor and have her run a full battery of bloodwork again.. If you can, make an appointment with her so she can see the rash (just in case it disappears).. Make sure they check for lyme disease, lupus, parvovirus and anything else with a symptomatic rash that I might be forgetting along with anything related to chronic pain (including a full thyroid panel).. Also, insist that you have an MRI for your own piece of mind, if nothing else..
I'm sorry that I can't offer more help or support.. Believe me when I say that I know how difficult life can be.. I've been so sick in the past that I honestly wanted to die, but something kept me going and searching for answers even when my doctors didn't seem to have any..
And as far as fibromyalgia goes, it can coexist with other conditions.. When your body is constantly out of whack, your nervous system can screw up and there's apparently nothing that modern medicine can do to stop that.. I can only pray that you'll find some answers soon & that you'll find the strength within yourself to fight for them.. I know that fighting is tough when you're chronically ill, but it's probably the only way you're going to get any answers..
Take Care,
Melanie
First let me explain the concept of flares to you.. We experience symptoms all the time, but flares are basically when our body completely rebels and things get unbearable.. I wouldn't even know the definition of a flare unless I'd gotten my symptoms somewhat under control with medication, diet and exercise..
For several years, it was nothing but a constant flare for me.. There were no ups and downs, there was just badness, badness and more badness.. (Thus my user name Creeping Crud..) Before my diagnosis and consequent lifestyle changes and medications, I was so sick that I lost everything - my home, my fiance', my independence, my health, my dignity, my self worth - it was a living hell..
If I were you, I'd bring your rash up to your doctor and have her run a full battery of bloodwork again.. If you can, make an appointment with her so she can see the rash (just in case it disappears).. Make sure they check for lyme disease, lupus, parvovirus and anything else with a symptomatic rash that I might be forgetting along with anything related to chronic pain (including a full thyroid panel).. Also, insist that you have an MRI for your own piece of mind, if nothing else..
I'm sorry that I can't offer more help or support.. Believe me when I say that I know how difficult life can be.. I've been so sick in the past that I honestly wanted to die, but something kept me going and searching for answers even when my doctors didn't seem to have any..
And as far as fibromyalgia goes, it can coexist with other conditions.. When your body is constantly out of whack, your nervous system can screw up and there's apparently nothing that modern medicine can do to stop that.. I can only pray that you'll find some answers soon & that you'll find the strength within yourself to fight for them.. I know that fighting is tough when you're chronically ill, but it's probably the only way you're going to get any answers..
Take Care,
Melanie
Creeping Crud
06-22-2003, 05:08 PM
p.s. I would also have them run a full allergy panel on you too..
Take Care,
Melanie
Take Care,
Melanie
shokrokmom
06-23-2003, 12:15 AM
Melanie,
Thank you for explaining the meaning of a flare up. I didn't mean to offend anyone by my last post, so if I did, I am so very sorry.
I have tried various meds in the past, low dose Amitriptyline, which gave me violent mood swings(my kids do no need to bear witness to that, Naprosyn, which didn't do anything at all, Celebrex, I am allergic to Sulfa, and a slew of others, nothing seemed to help.
Docs keep telling me that I will feel better getting more excercise, the more active I am, the more painful my legs become, and then they weaken even more then I fall down more than I usually do. I try not to be too inactive, of course my 3 yr old wouldn't allow that anyways. LOL
I am not sure if I should be tested for Lymes, I have never been bitten by a tick in my entire life. I plan on discussing my thyroid, again, with my doc and see if I can talk him into ordering an ultrasound or something. We have already discussed Lupus and MS, of course, I can't seem to get him to order more tests. He is a really good doc, I really like him personally(which is VERY important to me that I like my docs).
And as far as help and support goes, just responding to my post helps me so much, I don't feel so alone. Thank you. =)
By the way, your screen name of Creeping Crud, I thought that was hilarious because when we were kids, my mother used to say to us "if you don't take a bath, you will get the creeping cruds" or "if you go play in that area, you will come out with the creeping crud" LOL
She also used to scare us with the "Collery Marbles" She would tell us that if we didn't eat certain things, or if we DID eat certain things, we would get the Collery Marbles.
Anyway, Thank you so much again for all your responses. I appreciate them so much, it lets me know that maybe someone really does care. Thank you.
Take care,
Michelle
Thank you for explaining the meaning of a flare up. I didn't mean to offend anyone by my last post, so if I did, I am so very sorry.
I have tried various meds in the past, low dose Amitriptyline, which gave me violent mood swings(my kids do no need to bear witness to that, Naprosyn, which didn't do anything at all, Celebrex, I am allergic to Sulfa, and a slew of others, nothing seemed to help.
Docs keep telling me that I will feel better getting more excercise, the more active I am, the more painful my legs become, and then they weaken even more then I fall down more than I usually do. I try not to be too inactive, of course my 3 yr old wouldn't allow that anyways. LOL
I am not sure if I should be tested for Lymes, I have never been bitten by a tick in my entire life. I plan on discussing my thyroid, again, with my doc and see if I can talk him into ordering an ultrasound or something. We have already discussed Lupus and MS, of course, I can't seem to get him to order more tests. He is a really good doc, I really like him personally(which is VERY important to me that I like my docs).
And as far as help and support goes, just responding to my post helps me so much, I don't feel so alone. Thank you. =)
By the way, your screen name of Creeping Crud, I thought that was hilarious because when we were kids, my mother used to say to us "if you don't take a bath, you will get the creeping cruds" or "if you go play in that area, you will come out with the creeping crud" LOL
She also used to scare us with the "Collery Marbles" She would tell us that if we didn't eat certain things, or if we DID eat certain things, we would get the Collery Marbles.
Anyway, Thank you so much again for all your responses. I appreciate them so much, it lets me know that maybe someone really does care. Thank you.
Take care,
Michelle
Creeping Crud
06-23-2003, 09:42 AM
Hey Michelle,
I'm really sorry if I sounded too harsh in yesterday's post.. You didn't personally offend me and I didn't mean to sound cranky, but I think my initial words probably could have been construed that way..
The point that I was really trying to get across (although I did it less than eloquently) was that there was a very long period of time that I experienced nothing but a constant "flare".. I didn't understand the concept of flares or how people could lead semi-normal lives with fibromyalgia because I was so sick all the time..
I don't generally like to talk about that period of my life because it brings up a lot of bad memories that I'd rather forget.. But when I hear a story such as yours and realize that one of the reasons I'm really on this board is to help support others, my story often comes back to haunt me (and I tend to get a little freaked out)..
I live every day with the fear that I might get that sick again.. And when I was finally diagnosed with fibromyalgia, I thought it was a load of crap too.. My first two rheumatologists did absolutely nothing to treat me - no pain medications, no help or suggestions about how to improve the quality of my life - they just told me I had fibromyalgia and sent me on my merry way as if what I was experiencing was trivial even though it was ruining my life..
There's no way that I could've exercised during that period of my life either.. Every little thing I did (even doing stupid little things like shaving my legs) came back to haunt me.. My body was in a complete state of rebellion and there was no end in sight..
I'm not sure when things finally changed for me, but I stopped seeing rheumatologists when I moved to Indiana and decided that I had to try to help myself.. The brain that I'd always treasured was failing me, my body was failing me - I was a total wreck.. I started with yoga (A.M. Yoga for beginners is a very good exercise video that's not very strenuous, but was extremely effective in my case).. The next step I took was cutting out toxins like MSG, Nutrasweet, alcohol and caffeine.. It took a while to detox, but by the time I'd done all that I could do & my health had improved slightly, I was ready to see a doctor again..
Even though my life is far from what one would consider "normal", it's closer than it's been in a very long time.. But that's really beside the point.. I feel like I've lost a large portion of my life to this disorder & it pains me to know that there are other people who are out there suffering just as much (if not more) than I was..
I'm sorry I mistakenly referred to your doctor as a woman, but I stand behind my suggestions that you show him the rash and have him run a full battery of tests again.. My ANA count was high when my symptoms were at their worst & I'd been temporarily diagnosed with just about everything in the book before I ever heard the word fibromyalgia..
The simple fact is that although I'd like to believe that there's something more wrong with you based on your previous bloodwork, I cannot guarantee that modern medicine is educated enough about the human brain and body to find it.. I spend a lot of my days wondering if fibromyalgia is the only thing wrong with me because of the times that I still get so terribly sick.. And when I get sick, I get scared because I never know how long it will last or whether I'm going to end up being that same person who lost everything years ago..
My empathy is clouded by fear and although I try to appear strong, there is a scared little girl on the inside who won't let me forget what life could be like again with a simple twist of fate.. It just disturbs me that you've been suffering for so long, yet nothing has really been done about it.. I really hope that you find the answers that you seek and start feeling better soon..
Take Care,
Melanie
I'm really sorry if I sounded too harsh in yesterday's post.. You didn't personally offend me and I didn't mean to sound cranky, but I think my initial words probably could have been construed that way..
The point that I was really trying to get across (although I did it less than eloquently) was that there was a very long period of time that I experienced nothing but a constant "flare".. I didn't understand the concept of flares or how people could lead semi-normal lives with fibromyalgia because I was so sick all the time..
I don't generally like to talk about that period of my life because it brings up a lot of bad memories that I'd rather forget.. But when I hear a story such as yours and realize that one of the reasons I'm really on this board is to help support others, my story often comes back to haunt me (and I tend to get a little freaked out)..
I live every day with the fear that I might get that sick again.. And when I was finally diagnosed with fibromyalgia, I thought it was a load of crap too.. My first two rheumatologists did absolutely nothing to treat me - no pain medications, no help or suggestions about how to improve the quality of my life - they just told me I had fibromyalgia and sent me on my merry way as if what I was experiencing was trivial even though it was ruining my life..
There's no way that I could've exercised during that period of my life either.. Every little thing I did (even doing stupid little things like shaving my legs) came back to haunt me.. My body was in a complete state of rebellion and there was no end in sight..
I'm not sure when things finally changed for me, but I stopped seeing rheumatologists when I moved to Indiana and decided that I had to try to help myself.. The brain that I'd always treasured was failing me, my body was failing me - I was a total wreck.. I started with yoga (A.M. Yoga for beginners is a very good exercise video that's not very strenuous, but was extremely effective in my case).. The next step I took was cutting out toxins like MSG, Nutrasweet, alcohol and caffeine.. It took a while to detox, but by the time I'd done all that I could do & my health had improved slightly, I was ready to see a doctor again..
Even though my life is far from what one would consider "normal", it's closer than it's been in a very long time.. But that's really beside the point.. I feel like I've lost a large portion of my life to this disorder & it pains me to know that there are other people who are out there suffering just as much (if not more) than I was..
I'm sorry I mistakenly referred to your doctor as a woman, but I stand behind my suggestions that you show him the rash and have him run a full battery of tests again.. My ANA count was high when my symptoms were at their worst & I'd been temporarily diagnosed with just about everything in the book before I ever heard the word fibromyalgia..
The simple fact is that although I'd like to believe that there's something more wrong with you based on your previous bloodwork, I cannot guarantee that modern medicine is educated enough about the human brain and body to find it.. I spend a lot of my days wondering if fibromyalgia is the only thing wrong with me because of the times that I still get so terribly sick.. And when I get sick, I get scared because I never know how long it will last or whether I'm going to end up being that same person who lost everything years ago..
My empathy is clouded by fear and although I try to appear strong, there is a scared little girl on the inside who won't let me forget what life could be like again with a simple twist of fate.. It just disturbs me that you've been suffering for so long, yet nothing has really been done about it.. I really hope that you find the answers that you seek and start feeling better soon..
Take Care,
Melanie
dayton
06-26-2003, 01:28 PM
Michelle, I thought I would jump in here. Have you thought about posting on the reflex sympathetic dystrophy site? They might be able to give you some ideas too. The reason I suggest this is your pain levels. Course with fibro they can be extremely high too but I thought they might also have some alternative ideas.
shokrokmom
06-27-2003, 02:03 AM
Hey all,
I just wanted to write a quick note(yeah, right, I don't write anything short LOL) in response to the posts.
Melanie,
No worries hun about the explination about flares, I think you worded it just fine ;)
Then, of course, I mention the rash, and it went away, I think it is starting to come back now, it's starting to itch again. :(
I am so sorry that I brought up so many bad memories for you, I am sorry that I made you feel bad, I certainly never intended anything like that. Feel free to e-mail me(if my e-mail address comes up with this post like it should) if you ever want to "chat" in private, it may make you feel better. :)
Dayton,
Thank you for your response, I will submit a post on the other board too and see if anyone there has any more suggestions.
I am going ot keep this short, I fell last night(again) and I am not feeling so hot.
Take care all,
Michelle
I just wanted to write a quick note(yeah, right, I don't write anything short LOL) in response to the posts.
Melanie,
No worries hun about the explination about flares, I think you worded it just fine ;)
Then, of course, I mention the rash, and it went away, I think it is starting to come back now, it's starting to itch again. :(
I am so sorry that I brought up so many bad memories for you, I am sorry that I made you feel bad, I certainly never intended anything like that. Feel free to e-mail me(if my e-mail address comes up with this post like it should) if you ever want to "chat" in private, it may make you feel better. :)
Dayton,
Thank you for your response, I will submit a post on the other board too and see if anyone there has any more suggestions.
I am going ot keep this short, I fell last night(again) and I am not feeling so hot.
Take care all,
Michelle
Creeping Crud
06-27-2003, 12:48 PM
Hey Michelle,
Please don't feel bad! You didn't hurt me or make me feel bad.. I'm the one who brought up my feelings, partially because I'm still in the process of dealing with them.. Everything I wrote about is always in the back of my mind and it's probably good therapy for me to discuss my inner turmoil with people who can actually understand where I'm coming from.. If I confront my fears, maybe I won't fear them anymore?
Please don't feel guilty about it.. I think it actually helped me.. I've never come out and said any of that on this board before.. It was actually a relief to admit that I'm not as strong as everyone would like to think I am.. I try, but trying only goes so far..
As the old saying goes, time heals all wounds.. I'm sure that in time, my memories will dim and I won't be as frightened anymore.. You seem like a really sweet person & I know that you weren't trying to hurt my feelings directly or indirectly.. I'm so sorry to read about your fall and hope you start to feel better soon..
Take Care,
Melanie (FMS Sufferer with Issues & Diarrhea of the Mouth) ;)
Please don't feel bad! You didn't hurt me or make me feel bad.. I'm the one who brought up my feelings, partially because I'm still in the process of dealing with them.. Everything I wrote about is always in the back of my mind and it's probably good therapy for me to discuss my inner turmoil with people who can actually understand where I'm coming from.. If I confront my fears, maybe I won't fear them anymore?
Please don't feel guilty about it.. I think it actually helped me.. I've never come out and said any of that on this board before.. It was actually a relief to admit that I'm not as strong as everyone would like to think I am.. I try, but trying only goes so far..
As the old saying goes, time heals all wounds.. I'm sure that in time, my memories will dim and I won't be as frightened anymore.. You seem like a really sweet person & I know that you weren't trying to hurt my feelings directly or indirectly.. I'm so sorry to read about your fall and hope you start to feel better soon..
Take Care,
Melanie (FMS Sufferer with Issues & Diarrhea of the Mouth) ;)
shokrokmom
06-27-2003, 06:03 PM
Melanie,
They do, indeed, say that time heals all wounds, so maybe this is the beginning of your healing proccess. I will keep my fingers crossed for you(well, maybe my eyes as my fingers will not cross anymore).
I suppose I should be grateful for the hubby I have, he hasn't threatened to leave or anything because of my health, but on the other hand, he just ignores and rolls his eyes. I don't complain outloud anymore, nobody listens anymore. I guess that is why I post on here, at least I know someone is listening and hearing me.
The other night when I fell, my hubby was out of town on work, I fell in the hallway and I landed on the laundry basket, I couldn't get up. I just kept yelling "I fell, I fell" and finally my 13 year old son came into the hallway(he had never seen me fall before).
I said "I fell" and he said to me "Well, get up", I told him I couldn't get up so he picked me up(he is 6 foot 1 and weighs 195 pounds)and the whole time he was laughing so hard that he got me laughing, in spite of the pain.I wasn't until later he realized the seriousness of the whole ordeal, then he didn't want to leave me alone(he was leaving the next morning to go camping with my dad and step mom) I told him to go because his dad would be home that afternoon. He was terribly worried when he left. I think after he realized I wasn't kidding when I fell it kind of freaked him out. He asked me what I tripped over and I told him "Nothing" I never trip, my legs just decide they don't feel like standing anymore and they lay down, carrying me with them.
At least it wasn't down the basement stairs again. LOL
Anyway, that is my silly story for the day.
Take care and feel better,
Michelle
"I am too damn young to be this old"
Michelle Age 36
[This message has been edited by shokrokmom (edited 06-27-2003).]
They do, indeed, say that time heals all wounds, so maybe this is the beginning of your healing proccess. I will keep my fingers crossed for you(well, maybe my eyes as my fingers will not cross anymore).
I suppose I should be grateful for the hubby I have, he hasn't threatened to leave or anything because of my health, but on the other hand, he just ignores and rolls his eyes. I don't complain outloud anymore, nobody listens anymore. I guess that is why I post on here, at least I know someone is listening and hearing me.
The other night when I fell, my hubby was out of town on work, I fell in the hallway and I landed on the laundry basket, I couldn't get up. I just kept yelling "I fell, I fell" and finally my 13 year old son came into the hallway(he had never seen me fall before).
I said "I fell" and he said to me "Well, get up", I told him I couldn't get up so he picked me up(he is 6 foot 1 and weighs 195 pounds)and the whole time he was laughing so hard that he got me laughing, in spite of the pain.I wasn't until later he realized the seriousness of the whole ordeal, then he didn't want to leave me alone(he was leaving the next morning to go camping with my dad and step mom) I told him to go because his dad would be home that afternoon. He was terribly worried when he left. I think after he realized I wasn't kidding when I fell it kind of freaked him out. He asked me what I tripped over and I told him "Nothing" I never trip, my legs just decide they don't feel like standing anymore and they lay down, carrying me with them.
At least it wasn't down the basement stairs again. LOL
Anyway, that is my silly story for the day.
Take care and feel better,
Michelle
"I am too damn young to be this old"
Michelle Age 36
[This message has been edited by shokrokmom (edited 06-27-2003).]
babyboo099
11-24-2003, 05:27 PM
Hi Michelle,
I have had fibro for many years......now wondering very seriously if I really have Lyme Disease. I had the same rash that you described, as did my friend who also has fibro. Everything that I have been reading on the subject is pointing to Lyme Disease with fibro as a manifestation of years of untreated Lyme Disease. Do a search for Lyme Disease and you will see what I mean. I have appointments with my regular doc and also with a lyme literate md within the next few weeks to discuss this option as opposed to just fibro only. Here is my email address if you want to chat, get more info, etc...
babyboo009@yahoo.com
Stacey
I have had fibro for many years......now wondering very seriously if I really have Lyme Disease. I had the same rash that you described, as did my friend who also has fibro. Everything that I have been reading on the subject is pointing to Lyme Disease with fibro as a manifestation of years of untreated Lyme Disease. Do a search for Lyme Disease and you will see what I mean. I have appointments with my regular doc and also with a lyme literate md within the next few weeks to discuss this option as opposed to just fibro only. Here is my email address if you want to chat, get more info, etc...
babyboo009@yahoo.com
Stacey
shokrokmom
11-24-2003, 05:50 PM
Hi Stacey,
As you can see by my post, it has been a while since I have posted on this thread so I was a little surprised to see a reply on it. LOL
Anyhow, a little update on me...
I have given up on a diagnosis, as has my doc, he has resorted to the ole "it's all in your head and you need psycho-therapy because it is something from your past manafesting itself" He refuses to do any blood work or any tests, he refuses to refer me to anyone else, the pain managment won't help me because I didn't show up there with a diagnosis in hand, therefore, I am left standing naked, alone and in pain. My doc makes me feel ashamed and makes me feel like I am begging for any refills on ANY meds, so I don't even bother anymore, I have decided that I will just ruin my liver taking the 10 to 15 extra strength tylenols a day and still not get any relief. Oh well. It makes me so angry when I read on these boards how all these fibro patients get all these pain meds, and strong ones too, and I can't get ANYTHING without feeling shame. It must be the fact that I have state assisted medical insurance and I don't have private insurance or I am not a self pay, I don't know.
Anyway, Take care,
Michelle
As you can see by my post, it has been a while since I have posted on this thread so I was a little surprised to see a reply on it. LOL
Anyhow, a little update on me...
I have given up on a diagnosis, as has my doc, he has resorted to the ole "it's all in your head and you need psycho-therapy because it is something from your past manafesting itself" He refuses to do any blood work or any tests, he refuses to refer me to anyone else, the pain managment won't help me because I didn't show up there with a diagnosis in hand, therefore, I am left standing naked, alone and in pain. My doc makes me feel ashamed and makes me feel like I am begging for any refills on ANY meds, so I don't even bother anymore, I have decided that I will just ruin my liver taking the 10 to 15 extra strength tylenols a day and still not get any relief. Oh well. It makes me so angry when I read on these boards how all these fibro patients get all these pain meds, and strong ones too, and I can't get ANYTHING without feeling shame. It must be the fact that I have state assisted medical insurance and I don't have private insurance or I am not a self pay, I don't know.
Anyway, Take care,
Michelle