k2626
02-10-2009, 03:09 AM
Hi guys, I am back again. As many of you know I have had symptoms since June and no dx after thousands of dollars on tests-labs, MRI, EMG, full body bone scan, ultra sounds...
One week in June I started to get stabbing body pains, mainly in random toes, fingers, spine, ankle...though months before that I would get it in my eyes but I thought it was from revitalash. A few days after it all started I began to get what felt like a buzzing on my left foot on and off and extreme joint cracking all over-hundreds of times per day. Well months after I started to get muscle twitching all over, horizontal beaus lines developed on all nail, I would get random numbness in odd parts of my right hand. Also, I get some muscle cramps and now nerve pains.
I do not have the tender points. I have been tested for EVERYTHING. All I keep coming back to is fibro, or maybe lupus which may have not shown in my blood. I now have been getting stabbing pains in my left ribcage area as of today.
The worst when this was all hitting at once and I was getting THOUSANDS of muscle twitches per day...that all lasted one month. I now seem to have some good days, or a good week and then the pains start up again or the cracking etc... I guess these are flairs.
Any thoughts appreciated.....
Just not sure if one can have fibro without the tender points. My pains are either stabbing, shooting or burning nerve pains. Also, it is widespread ....
One week in June I started to get stabbing body pains, mainly in random toes, fingers, spine, ankle...though months before that I would get it in my eyes but I thought it was from revitalash. A few days after it all started I began to get what felt like a buzzing on my left foot on and off and extreme joint cracking all over-hundreds of times per day. Well months after I started to get muscle twitching all over, horizontal beaus lines developed on all nail, I would get random numbness in odd parts of my right hand. Also, I get some muscle cramps and now nerve pains.
I do not have the tender points. I have been tested for EVERYTHING. All I keep coming back to is fibro, or maybe lupus which may have not shown in my blood. I now have been getting stabbing pains in my left ribcage area as of today.
The worst when this was all hitting at once and I was getting THOUSANDS of muscle twitches per day...that all lasted one month. I now seem to have some good days, or a good week and then the pains start up again or the cracking etc... I guess these are flairs.
Any thoughts appreciated.....
Just not sure if one can have fibro without the tender points. My pains are either stabbing, shooting or burning nerve pains. Also, it is widespread ....
Sponsor
bluelakelady
02-10-2009, 11:05 AM
hi,
symptomatically you fit. my personal opinion is tender points are overrated. if the doctor is even slightly off you will not respond. i have a feeling the use of tenderpoints is perhaps a possible aspect of fibro not the foundation for diagnosis. sometimes mine hurt and sometimes they don't.
have you discussed this with your doctor? i don't remember if you mentioned that when you were here before. up at the top of the fibro page there is a post from tkgoodspirit and it has a list of symptoms. if you have not already done so, may i suggest printing it out, filling it out and returning with it to your doctor.
when the twitches happen try not to fight it. it only makes them worse. i relax and do some deep breathing and tell myself to just trip out on what my body is doing. i will never stop being amazed at what our bodies can do while we simply watch.
peace,
blue
symptomatically you fit. my personal opinion is tender points are overrated. if the doctor is even slightly off you will not respond. i have a feeling the use of tenderpoints is perhaps a possible aspect of fibro not the foundation for diagnosis. sometimes mine hurt and sometimes they don't.
have you discussed this with your doctor? i don't remember if you mentioned that when you were here before. up at the top of the fibro page there is a post from tkgoodspirit and it has a list of symptoms. if you have not already done so, may i suggest printing it out, filling it out and returning with it to your doctor.
when the twitches happen try not to fight it. it only makes them worse. i relax and do some deep breathing and tell myself to just trip out on what my body is doing. i will never stop being amazed at what our bodies can do while we simply watch.
peace,
blue
BelleoftheSouth
02-10-2009, 11:54 AM
Hello. Have you been to a Neurologist? I had to go due to the electrical shocks in arms and hands when I sneezed just to make sure I didn't have problems in the upper neck and to rule out MS.
Good Luck and let us know how you're doing should you go.
Be Well.
Belle~
Good Luck and let us know how you're doing should you go.
Be Well.
Belle~
k2626
02-10-2009, 01:07 PM
Hi there, thanks...
Yes, I went to 3 different neuros, I had an MRI of head and full spine as well as an EMG--nothing found.
I also just get random pains in my stomach/rib area, chest, and eyes. Oh also odd pains in my teeth, like a sharp pain!
Yes, I went to 3 different neuros, I had an MRI of head and full spine as well as an EMG--nothing found.
I also just get random pains in my stomach/rib area, chest, and eyes. Oh also odd pains in my teeth, like a sharp pain!
kirstee
02-10-2009, 04:17 PM
When I had a really bad spill from my horse, I broke my collar bone and separated my shoulder. I was really messed up from that accident. Symptoms started showing up that seemed like my nervous symptom was irritated. I could scratch an itch on my neck, and my whole body would react with pain. It was really werid. Eventually this symptom died down, but I was left with the basic symptoms of FMS in its wake. I don't know if this helps you or not, but what bluelake says makes sense to me. Have you had any accidents or injuries? This is a common trigger of FMS.
Bye!
Kirstee
Bye!
Kirstee
rosebuddy
02-10-2009, 10:14 PM
i can't find my own tenderpoints except around my collar bone area like where the seat belt rubs. If i press around there, i can feel them. My chiro hits them when he pulls on my ankle or knees. my rheumy has found 11 before but usually not so many.
k2626
02-10-2009, 11:37 PM
I did not have any injuries but did have plastic surgery before all of this. I have also had gerd for 2 yrs that seemed to come out of the blue for someone who is usually quite healthy-not sure if its related.
I have researched endless hrs and the only things I come up with is fibro, lupus or thyroid that seem to fit all my symptoms-extreme joint cracking, muscle twitching, burning nerve pains, tingling, numbness, stabbing pains all over but mainly odd joints. I thought for awhile it could be MS but the joint cracking does not fit into that, also it just seemed to slam me starting in June for the most part. I do get flares, like I said it was horrific a few months back when it was everything....
Its scary not knowing what is wrong, I think the worst and keep thinking a major disease has been missed
I have researched endless hrs and the only things I come up with is fibro, lupus or thyroid that seem to fit all my symptoms-extreme joint cracking, muscle twitching, burning nerve pains, tingling, numbness, stabbing pains all over but mainly odd joints. I thought for awhile it could be MS but the joint cracking does not fit into that, also it just seemed to slam me starting in June for the most part. I do get flares, like I said it was horrific a few months back when it was everything....
Its scary not knowing what is wrong, I think the worst and keep thinking a major disease has been missed
DeBeachSiren
02-11-2009, 02:52 AM
Hi,
Glad you're back, but wish it was under better circumstances.
Get the book by Devin Starlanyl MD about fibro and myofascial diseases. I has lists of questions about phantom tooth pain, different stuff like that and tell you and show in diagrams where the trigger points are and where they refer pain to. You could have deep contracted tissue that's causing your GERD and other pains.
We all know how hard it is to have things wrong and different diseases go whirling through your head and you wonder if you have them. Ya know we'll support you.
DeBeachSiren
Glad you're back, but wish it was under better circumstances.
Get the book by Devin Starlanyl MD about fibro and myofascial diseases. I has lists of questions about phantom tooth pain, different stuff like that and tell you and show in diagrams where the trigger points are and where they refer pain to. You could have deep contracted tissue that's causing your GERD and other pains.
We all know how hard it is to have things wrong and different diseases go whirling through your head and you wonder if you have them. Ya know we'll support you.
DeBeachSiren
k2626
02-11-2009, 03:13 AM
Thanks so much...
So toothpain can occur with fibro? Its so odd, its like a jolt to my teeth then goes away after a minute or so. I get these jolts all over my body in waves. Today I have had about 40 stabbing jolts from my ankle, tooth, ribcage, wrist, etc...
Is this common with fibro?
So toothpain can occur with fibro? Its so odd, its like a jolt to my teeth then goes away after a minute or so. I get these jolts all over my body in waves. Today I have had about 40 stabbing jolts from my ankle, tooth, ribcage, wrist, etc...
Is this common with fibro?
DeBeachSiren
02-12-2009, 02:08 AM
K,
I don't really know to much about stabbing pain. Mine is like deep and gnawing. I've had trigger points knot up in my jaw, it's always the right side, and it feels like all the teeth on that side hurt. My youngest works for a dentist and they get patients with phantom toothaches every now and then. It's really painful to get the jaw area to loosen up. There's one thing for sure, I could kiss whoever invented tennis balls, they are so useful to me to break up knotty tissue. Hope you're feeling better today.
DeBeachSiren
I don't really know to much about stabbing pain. Mine is like deep and gnawing. I've had trigger points knot up in my jaw, it's always the right side, and it feels like all the teeth on that side hurt. My youngest works for a dentist and they get patients with phantom toothaches every now and then. It's really painful to get the jaw area to loosen up. There's one thing for sure, I could kiss whoever invented tennis balls, they are so useful to me to break up knotty tissue. Hope you're feeling better today.
DeBeachSiren
robinegg
02-26-2009, 08:46 AM
Hi guys, I am back again. As many of you know I have had symptoms since June and no dx after thousands of dollars on tests-labs, MRI, EMG, full body bone scan, ultra sounds...
One week in June I started to get stabbing body pains, mainly in random toes, fingers, spine, ankle...though months before that I would get it in my eyes but I thought it was from revitalash. A few days after it all started I began to get what felt like a buzzing on my left foot on and off and extreme joint cracking all over-hundreds of times per day. Well months after I started to get muscle twitching all over, horizontal beaus lines developed on all nail, I would get random numbness in odd parts of my right hand. Also, I get some muscle cramps and now nerve pains.
I do not have the tender points. I have been tested for EVERYTHING. All I keep coming back to is fibro, or maybe lupus which may have not shown in my blood. I now have been getting stabbing pains in my left ribcage area as of today.
The worst when this was all hitting at once and I was getting THOUSANDS of muscle twitches per day...that all lasted one month. I now seem to have some good days, or a good week and then the pains start up again or the cracking etc... I guess these are flairs.
Any thoughts appreciated.....
Just not sure if one can have fibro without the tender points. My pains are either stabbing, shooting or burning nerve pains. Also, it is widespread ....
Hi There
I have seen many of your posts over the months I think I may have responded a couple of times.......
You have all of the symptoms I had inc rib pain like pinching and all thoses tests I was totally convinced I had pancreatic cancer as the pain was just unbearable in my stomach and my back I had many visits to the ER telling me it was purely functional giving me pain meds everytime At one time at the hospital my B12 was 320 they said it was normal but I had every symptoms and no one listened..........And you have also been on medication for gerd you said if I remember correctly that you had surgery when all this started.......
I very strongly suspect you now have a severe B12 deficiency [please get this tested......You should also ask fir the following which may be elevated in a deficeincy Homocysteine.....UMMA.......Also get a active B12 Holotranscobalamin.......
Anything below 550 with your symptoms is too low......
I know what those stabbing pains are like they are painful I went undiagnosed for 6 years but I now realize it was something I have had since a child my children also have it as my sister........Remember you do not have to be anemic to have it.......
Always ask the doctor for your levels dont let him tell you they are normal my daughter was 160 and one doctor who I dont normally go to just went to get bloods said that she was fine and wouldnt treat you however my doctor did...
The medication for gerd puts you at a high risk as does the use of nitrious oxide in surgery.....
May I suggest you search "
"vitamin B12 deficiency commonly misdiagnosed".....you should be able to find a very good forum there to go to......
It really is worth checking this out as the longer it goes without treatment the worse you will get....
Good luck
One week in June I started to get stabbing body pains, mainly in random toes, fingers, spine, ankle...though months before that I would get it in my eyes but I thought it was from revitalash. A few days after it all started I began to get what felt like a buzzing on my left foot on and off and extreme joint cracking all over-hundreds of times per day. Well months after I started to get muscle twitching all over, horizontal beaus lines developed on all nail, I would get random numbness in odd parts of my right hand. Also, I get some muscle cramps and now nerve pains.
I do not have the tender points. I have been tested for EVERYTHING. All I keep coming back to is fibro, or maybe lupus which may have not shown in my blood. I now have been getting stabbing pains in my left ribcage area as of today.
The worst when this was all hitting at once and I was getting THOUSANDS of muscle twitches per day...that all lasted one month. I now seem to have some good days, or a good week and then the pains start up again or the cracking etc... I guess these are flairs.
Any thoughts appreciated.....
Just not sure if one can have fibro without the tender points. My pains are either stabbing, shooting or burning nerve pains. Also, it is widespread ....
Hi There
I have seen many of your posts over the months I think I may have responded a couple of times.......
You have all of the symptoms I had inc rib pain like pinching and all thoses tests I was totally convinced I had pancreatic cancer as the pain was just unbearable in my stomach and my back I had many visits to the ER telling me it was purely functional giving me pain meds everytime At one time at the hospital my B12 was 320 they said it was normal but I had every symptoms and no one listened..........And you have also been on medication for gerd you said if I remember correctly that you had surgery when all this started.......
I very strongly suspect you now have a severe B12 deficiency [please get this tested......You should also ask fir the following which may be elevated in a deficeincy Homocysteine.....UMMA.......Also get a active B12 Holotranscobalamin.......
Anything below 550 with your symptoms is too low......
I know what those stabbing pains are like they are painful I went undiagnosed for 6 years but I now realize it was something I have had since a child my children also have it as my sister........Remember you do not have to be anemic to have it.......
Always ask the doctor for your levels dont let him tell you they are normal my daughter was 160 and one doctor who I dont normally go to just went to get bloods said that she was fine and wouldnt treat you however my doctor did...
The medication for gerd puts you at a high risk as does the use of nitrious oxide in surgery.....
May I suggest you search "
"vitamin B12 deficiency commonly misdiagnosed".....you should be able to find a very good forum there to go to......
It really is worth checking this out as the longer it goes without treatment the worse you will get....
Good luck
k2626
02-26-2009, 01:55 PM
Thanks so much..my b 12 was checked and is perfect. I now have horrible burning in my stomach which I did not have too bad w GERD...
robinegg
02-26-2009, 08:06 PM
Thanks so much..my b 12 was checked and is perfect. I now have horrible burning in my stomach which I did not have too bad w GERD...
I would be interested to know what your perfect level was? Was it above 1000........People who have deficiencies can still have a so called NORMAL reading that is why the other tests are very important........Perhaps it would not hurt to get some Jarrows methylcobalamin Sublinguals and try it you get a reaction that is all the proof you need.....
You may also be very low in other nutrients as well like Zinc folate magnesium and other Bs.........
All people with fibromyalgia SHOULD have their B12 & Folate levels checked B12 mimics so many other diseases inc MS.........
As I said i was given a so many differnt diagnoses over the years its just not funny and B12 can seriously affect your stomach big time it has been linked to annorexia because the cells become so damaged you just cant eat anything digestion just doesnt happen it also affects ones mind...
I truely wish you well It is very upsetting to see someone suffer I know how that feels I would say you are also suffering with extreme anxiety as well perhaps having trouble sleeping.....I also know what it feels like to feel the best i have ever felt in my life all thanks to a vitamin the most important one at that........If you had it tested a few months ago and you are getting worse get it done gain mine went from 320 to 130 in 9 months:dizzy:
It is my wish to make others aware of this problem most doctors know nothing about it...If this post doesnt help you it may help another reader......
If you wish I can list all the symptoms for you there are great deal.......
Here to help if you need it
Cheers
I would be interested to know what your perfect level was? Was it above 1000........People who have deficiencies can still have a so called NORMAL reading that is why the other tests are very important........Perhaps it would not hurt to get some Jarrows methylcobalamin Sublinguals and try it you get a reaction that is all the proof you need.....
You may also be very low in other nutrients as well like Zinc folate magnesium and other Bs.........
All people with fibromyalgia SHOULD have their B12 & Folate levels checked B12 mimics so many other diseases inc MS.........
As I said i was given a so many differnt diagnoses over the years its just not funny and B12 can seriously affect your stomach big time it has been linked to annorexia because the cells become so damaged you just cant eat anything digestion just doesnt happen it also affects ones mind...
I truely wish you well It is very upsetting to see someone suffer I know how that feels I would say you are also suffering with extreme anxiety as well perhaps having trouble sleeping.....I also know what it feels like to feel the best i have ever felt in my life all thanks to a vitamin the most important one at that........If you had it tested a few months ago and you are getting worse get it done gain mine went from 320 to 130 in 9 months:dizzy:
It is my wish to make others aware of this problem most doctors know nothing about it...If this post doesnt help you it may help another reader......
If you wish I can list all the symptoms for you there are great deal.......
Here to help if you need it
Cheers
Smashing
02-27-2009, 09:32 AM
My pains started out as numbness, tingling, sharp stings...that went on for about a year. But like all the symptoms of fibro they have evolved now it's more of a deep muscle pain, burning with the stinging, tingling thrown in for good measure! A person can drive themselves crazy trying to get a doctor to diagnose them with something to explain all the issues they are having. I have given up, I have Tramacet for the pain and most days lately it isn't doing much. but you have to plug along Yes? I think I have resigned myself to do the best I can with whatever I have to just get through a day and forget about anything else. Is that a "Bad attitude"!! I don't know.
k2626
02-27-2009, 04:54 PM
Thanks I am not doing well. My dr just told me I have pancreatitis. I have an ultra sound tues am and more labs monday. I asked him if it could be cancer causing this inflammation, he said yes.
This was my fear. I pray its just pancreatitis and thats it.
I am a wreck right now
This was my fear. I pray its just pancreatitis and thats it.
I am a wreck right now
robinegg
02-28-2009, 06:30 AM
hi
Let us know how you get on,,,,,,,I guess you are having bloods taken.....Hopefully it will be something simple like a gallstone believe this can cause pancreatitis which will show on an ultrasound.....My granmother had this and it was very very painful indeed so I hope that you are ok as well as can be expected.........
Thinking of you
Take care
Let us know how you get on,,,,,,,I guess you are having bloods taken.....Hopefully it will be something simple like a gallstone believe this can cause pancreatitis which will show on an ultrasound.....My granmother had this and it was very very painful indeed so I hope that you are ok as well as can be expected.........
Thinking of you
Take care