Emaria
03-29-2005, 11:47 AM
Hi everyone. I've posted a few times on the board here, but not in this topic. I have been trying to find out what is the world is wrong with me. I have felt bad for over 3 years now and I'm tired of everyone telling me that it is all in my head, I'm just lazy or that I'm being a hypochondriac.
I am basically a healthy person other than I have mitral valve prolapse and it is very mild. I have regular check ups with my cardiologist. My cholesterol is fine. My blood pressure is fine although usually on the low side. I do not drink or smoke and I am not overweight. Could stand to lose about 5 lbs or so but definately not overweight. LOL!
It has started with a pain in my left side under my arm and my left breast. I have had a mammogram, ultrasound and bone scan done and everything came back ok. My dr. basically said it was from acid reflux and that is what he diagnosed me with.
I have lived with this pain for at least 3 years and it has never gotten any better. Over the last year it has gotten worse at times and I find myself tired all the time. I can't do the things that I once used to do. I loved playing and wrestling with the kids. Jumping on the trampoline or just enjoying taking my dog for a walk. Even sex has become a chore to me. I just don't have the energy. I'm 38 years old and sometimes I feel like I'm 88!
My arms have hurt so bad this week. It feels like I have bruises on them but I don't and I haven' hit them or bumped them on anything. My legs hurt like I have mentrual cramps but I don't.
Last thursday I went to the ER because my chest hurt and down my left side and into my left hip. They did a chest xray and an EKG along with some blood work. Everything came back fine and it wasn't my heart. The dr. said he had no clue what was wrong with me. They gave me a shot for the pain and sent me on my way. When I got there I was shaking so bad I couldn't even sign my own name on the admittance form.
The next day I drove to my sisters which is about a 40 minute drive one way. On my way home I stopped at Wally World. Boy was that a mistake. My legs almost gave out on me., I would've went down if I hadn't been holding onto the cart. When I got home I climbed into bed and stayed there. I didn't do much of anything on Saturday either. Easter Sunday I felt a little better but still kinda weak.
The past couple of days I just hurt so bad and nothing helps.
I also have major tension in my neck and shoulders all the time.
Sometimes at night if I wake up I feel like I am embedded in the mattress and each limb weighs about 100 lbs. There have even been days where it is a chore to lift my coffee mug.
Sorry this is so long and drawn out. I'm going to the doctor this afternoon. Hopefully he will listen to me and not continue to say that I am depressed and put me on something like Paxil. I have a very low tolerence to medications.
I am basically a healthy person other than I have mitral valve prolapse and it is very mild. I have regular check ups with my cardiologist. My cholesterol is fine. My blood pressure is fine although usually on the low side. I do not drink or smoke and I am not overweight. Could stand to lose about 5 lbs or so but definately not overweight. LOL!
It has started with a pain in my left side under my arm and my left breast. I have had a mammogram, ultrasound and bone scan done and everything came back ok. My dr. basically said it was from acid reflux and that is what he diagnosed me with.
I have lived with this pain for at least 3 years and it has never gotten any better. Over the last year it has gotten worse at times and I find myself tired all the time. I can't do the things that I once used to do. I loved playing and wrestling with the kids. Jumping on the trampoline or just enjoying taking my dog for a walk. Even sex has become a chore to me. I just don't have the energy. I'm 38 years old and sometimes I feel like I'm 88!
My arms have hurt so bad this week. It feels like I have bruises on them but I don't and I haven' hit them or bumped them on anything. My legs hurt like I have mentrual cramps but I don't.
Last thursday I went to the ER because my chest hurt and down my left side and into my left hip. They did a chest xray and an EKG along with some blood work. Everything came back fine and it wasn't my heart. The dr. said he had no clue what was wrong with me. They gave me a shot for the pain and sent me on my way. When I got there I was shaking so bad I couldn't even sign my own name on the admittance form.
The next day I drove to my sisters which is about a 40 minute drive one way. On my way home I stopped at Wally World. Boy was that a mistake. My legs almost gave out on me., I would've went down if I hadn't been holding onto the cart. When I got home I climbed into bed and stayed there. I didn't do much of anything on Saturday either. Easter Sunday I felt a little better but still kinda weak.
The past couple of days I just hurt so bad and nothing helps.
I also have major tension in my neck and shoulders all the time.
Sometimes at night if I wake up I feel like I am embedded in the mattress and each limb weighs about 100 lbs. There have even been days where it is a chore to lift my coffee mug.
Sorry this is so long and drawn out. I'm going to the doctor this afternoon. Hopefully he will listen to me and not continue to say that I am depressed and put me on something like Paxil. I have a very low tolerence to medications.
Sponsor
Emaria
03-29-2005, 12:25 PM
I also forgot to say that both sides of my ribs are very tender and sore most of the time. I also have slight dizzy spells at times. Just where I feel kinda light headed or DUH headed as I say. Sometimes I can trip over my own feet. LOL!
It just sucks when you can't plan on doing anything, even going out to dinner because you don't know how you'll feel or if you'll be able to make it through the dinner.
It just sucks when you can't plan on doing anything, even going out to dinner because you don't know how you'll feel or if you'll be able to make it through the dinner.
k9stylist
03-29-2005, 12:27 PM
I can't help much as I do not have a diagnosis yet either. But i can surely rleate to mosy of your symptoms. I have been hospitalized twice for what htye thought may be cardiac related. So far they can only tell me I have Atypical Facial Pain. No help for the neck, shoulder arm trouble, except sometimes the chiro can give me some relief. Hang in there, help is out there somewhere. It has to be, we can't have to live like this the rest of our lives. Best wishes for a quick and helpful diagnosis.
Emaria
03-29-2005, 12:29 PM
thank you K9stylist.
I go to a chiro on a regular basis but sometimes it makes me feel worse, espcially my ribs.
I go to a chiro on a regular basis but sometimes it makes me feel worse, espcially my ribs.
SuzU
03-29-2005, 01:02 PM
Emaria-
I have had all of your symptoms, particularly the legs giving out part and the chest pain, as well as the sensation of being "embedded" in my mattress. (Good description-I'll have to borrow that someday.)
In addition, I've had the pain in breast, under-arm area, shaking, plus about a gazillion others (like bladder burning, frequency, numbness, tingling, etc)
and I've been worked up for multiple sclerosis with MRI's, spinal tap, evoked potentials-so far everything negative. (Though I'm having the MRI's repeated because there is a lesion on my neck that the doctor wants to make sure isn't MS.)
If you have had a full MS and auto-immune work up (to rule out stuff like lupus, etc,) it is possible that this is all related to FMS and/or Chronic Myofascial Pain syndrome. Isn't there a post about a connection between mitral valve prolapse and FM? I find it interesting, because two of my sisters have MVP and my mother did also-yet I've had several echo-cardiograms which have all been negative.
I would pursue a good MS work up in a reputable hospital with an MS specialist, just so you can put that all behind you.
I'm 38 as well.
Blessings, hope you get to the bottom of all of this.
I have had all of your symptoms, particularly the legs giving out part and the chest pain, as well as the sensation of being "embedded" in my mattress. (Good description-I'll have to borrow that someday.)
In addition, I've had the pain in breast, under-arm area, shaking, plus about a gazillion others (like bladder burning, frequency, numbness, tingling, etc)
and I've been worked up for multiple sclerosis with MRI's, spinal tap, evoked potentials-so far everything negative. (Though I'm having the MRI's repeated because there is a lesion on my neck that the doctor wants to make sure isn't MS.)
If you have had a full MS and auto-immune work up (to rule out stuff like lupus, etc,) it is possible that this is all related to FMS and/or Chronic Myofascial Pain syndrome. Isn't there a post about a connection between mitral valve prolapse and FM? I find it interesting, because two of my sisters have MVP and my mother did also-yet I've had several echo-cardiograms which have all been negative.
I would pursue a good MS work up in a reputable hospital with an MS specialist, just so you can put that all behind you.
I'm 38 as well.
Blessings, hope you get to the bottom of all of this.
Emaria
03-29-2005, 01:20 PM
Thanks SuzU.
I think my dr. had it all in HIS head that it was acid reflux and depression that he didn't test for anything else.
When I go in this afternoon I'm definately going to bring it up and if he gives me the brush off then I am off to find a new doctor.
I have not had any MS workups. But I think they have done blood work for just about everything else. :)
I think my dr. had it all in HIS head that it was acid reflux and depression that he didn't test for anything else.
When I go in this afternoon I'm definately going to bring it up and if he gives me the brush off then I am off to find a new doctor.
I have not had any MS workups. But I think they have done blood work for just about everything else. :)
brenda5387
04-19-2005, 12:15 PM
Hi, I just joined this forum this morning because I am looking for answers for my husband. He has a lesion on his T10 vertebrae and all tests are coming back negative. But while reading the posts I saw yours and wanted to tell you that I have Fibromyalgia and am on disability from it. What you describe sure sounds like what I have experienced in the past. I really believe that you need to have this checked out. The only way they can diagnose Fibro is by eliminating a whole list of things. There is no one test that can tell you that you have Fibro. Since all of your tests are coming back negative I would highly suspect Fibro. Does your pain seem to travel? By that I mean does it seem like it is not always in the same place? There are so many great sites on the internet that can give you a lot of information. Just go to a good search engine and type in Fibromyalgia and start reading. This is how I found out what was wrong with me. It took me 2 years to finally find out what it was but when I did and was treated it changed my life. I still can't work but my life is manageable. Also, the problem with your legs is called "restless leg syndrom" and that was my very first symtom.
Good luck and I pray you find the answers you need.
Good luck and I pray you find the answers you need.
Lyn in Michigan
04-21-2005, 09:48 AM
Brenda 5387
Hi, you say once you found out and were treated for fibro, then your life seemed better. How did they treat you?
Thanks Lyn in Michigan :)
Hi, you say once you found out and were treated for fibro, then your life seemed better. How did they treat you?
Thanks Lyn in Michigan :)
Lyn in Michigan
04-21-2005, 10:24 AM
Emaria
HI PLEASE READ THIS WHOLE POST BECAUSE A LOT OF IT SOUNDS THE SAME AS YOUR STORY
Good morning, I was quite interested in reading your post. I have several of the same problems that you have and I think we should keep in touch. Here is my long drawn out story but it will sound very familiar to you. (I will try to keep it short).
First of all I was diagnosed almost 25 years ago with a Mitral Valve Prolapse which is nothing major but I have been on "atenolol which is the generic name or the brand name is tenormin" for these 25 years. It keeps my heart rate normal. If I don't take it my heart skips beats, adds beats, races etc. and this keeps it normal. When I go to get my teeth cleaned or have any extractions at the dentist I have to take 4 penicillin pills before each appt. They say it is a benign disorder and it really doesn't do much but it is a heart disorder!!! Also around the same time I was diagnosed with "fibro cystic breasts or cystic mastitis". When my kids were small they could never jump on me or play with me too rough because my breasts were always really sore. Over the years I have learned to live with that (with some difficulty but...you go on). The doctor always used to say - when I go through menopause it will change!!! Well from 25 years old to menopause is a long time. I have always stayed away from caffeine and chocolate can be bad also. Mammograms are the worst when you "always" have a sore chest. When I get my yearly check-ups I was always worried. The doctor says that my chest felt like it was all bumpy very small cysts and to watch my caffeine intake. I was also diagnosed with fibroids (the doc said the size of an orange) and it did eventually shrink when I started menopause. Oh yes, I am a 53 year old post menopausal woman. Anyway this is getting long already and I have just started!!! Other than that I have basically been pretty healthy. About 5 years ago I started getting awful headaches that have never fully gone away. It is always there. I then started having neck and shoulder pain and face, jaw pain, ear pain. I went for massages, every x-ray imaginable, cat scans of my brain, sinuses, thought the headache was sinus related but apparently not, MRI's etc. etc. My shoulders and neck ache so bad it is almost dehabilitating(sp). I went to several doctors, ortho docs, neuro's. and everyone said that it was my nerves because I was depressed!!! Well I wasn't or am not depressed just very upset that nobody can find out what is wrong with me (I guess that can depress anyone eh?) They wanted me to go to psychiatrists who only wanted to put me on "Paxil" and I fought it for years. I had acupuncture, sacral cranial therapy, traction, st. johns neuromuscular, trigger point therapy, injections of every kind and even went to a homeopathic doctor. Well here is where it will get interesting to you!!! This doctor right away told me that he thought I had an immune difficiency and told me to go to my own medical doctor and have a liver panel test done. It came back "positive" for "Epstein Barr Virus" and "CMV" virus which means I had or have a double liver infection. This also goes along with "Chronic Fatigue Syndrome". It is a form of mono. It can lay dormant in your system and it comes back on and off. Mine is back more than it is not which robs me of all of my energy, my throat is always sore, my sinuses hurt and my glands in my neck are usually swollen!!! He tried to treat me with all of these expensive homeopathic capsules for about a year and nothing worked. They say there is no cure for Epstein Barr virus. It won't kill you but it is not pleasant. I was also diagnosed many years ago with "GERD" which is esophagitus or acid reflux and I take pills every day for that.
Finally I went to a top Neurosurgeon who told me that in C5/6&7 (vertabraes in my cervical spine) were degenerating and I had bone spurs and arthritis. In Nov. 29 of 2003 I had an anterior cervical discectomy with donor bones and pins and plates and almost 15 months later, I am still in the same amount of pain in my neck and shoulders and it seems to be going into my back now. I get pains in my chest and the pain radiates down into my arm and into my hand and it makes my hand numb and tingly. My skin even hurts on my arms lots of times like it is chaffed and when you tell the doctors that they look at you like you are crazy!!! Well the neuro. doc said that should go away that it was "myolopathy" and it never went away.
Now for the good stuff - the neuro now says "oh I am afraid the operation did nothing, I am afraid you have "Fibromyalgia"!!! What an awful way to find out after having major surgery!!!! In thinking back from my MVP which they say can be related to Fibromyalgia and fibroids in my chest, under my arm in my uterus and all of these other aches, I have probably had fibro for the whole 25 years!!!! I have been to the pain clinic and have had steroid injections, cortozone shots, injections into the back of my head for occipital pain (I could become a doctor myself ha ha). Nothing has worked. I had some medial branch blocks done before and they didn't work but the pain doc. wanted me to try again. They seemed to help a bit this time so on May 17, I am having the nerves burned in my facet joints in between the vertabraes in my neck because he says and my family doc. says I have "Chronic Myofascial Pain" which is what you could have too. I am at my wits end. Every day is a struggle and your story sounds so familiar. I haven't given up yet (I could make this whole story so much longer because there is a lot more but I am comparing what you are going through to my own story. I have insomnia very bad. I take Ambien 10mg every night and I have for about 4 years. I went to a sleep clinic and they told me to just stay on the sleeping pill for the rest of my life!!!! I tried Paxil finally and it put weight on me and my doctor changed me to "Prozac" which they say doesn't put as much weight on you. Anyway I fought antidepressants for years and finally gave in and I am glad I did because it has helped somewhat. I take Fosamax which is supposed to help with bone loss, Lodeine which is a substitute for Celebrex, Glusomanine with Chondroitin,Prilosec for GERD, OPC-3,Noni Juice, Oregano Oil for energy, etc. etc. and I don't know if any of it has helped. I am sorry for the long post but there is no sense in telling half the story. I hope you get some help soon or at least a diagnosis. I hate when nobody wants to listen and we are hurting so much. I am here for you if you want to ask me any questions. I am not an expert but will try to help if you need any advice,
Thanks for listening and take care of yourself
Lyn in Michigan :angel:
HI PLEASE READ THIS WHOLE POST BECAUSE A LOT OF IT SOUNDS THE SAME AS YOUR STORY
Good morning, I was quite interested in reading your post. I have several of the same problems that you have and I think we should keep in touch. Here is my long drawn out story but it will sound very familiar to you. (I will try to keep it short).
First of all I was diagnosed almost 25 years ago with a Mitral Valve Prolapse which is nothing major but I have been on "atenolol which is the generic name or the brand name is tenormin" for these 25 years. It keeps my heart rate normal. If I don't take it my heart skips beats, adds beats, races etc. and this keeps it normal. When I go to get my teeth cleaned or have any extractions at the dentist I have to take 4 penicillin pills before each appt. They say it is a benign disorder and it really doesn't do much but it is a heart disorder!!! Also around the same time I was diagnosed with "fibro cystic breasts or cystic mastitis". When my kids were small they could never jump on me or play with me too rough because my breasts were always really sore. Over the years I have learned to live with that (with some difficulty but...you go on). The doctor always used to say - when I go through menopause it will change!!! Well from 25 years old to menopause is a long time. I have always stayed away from caffeine and chocolate can be bad also. Mammograms are the worst when you "always" have a sore chest. When I get my yearly check-ups I was always worried. The doctor says that my chest felt like it was all bumpy very small cysts and to watch my caffeine intake. I was also diagnosed with fibroids (the doc said the size of an orange) and it did eventually shrink when I started menopause. Oh yes, I am a 53 year old post menopausal woman. Anyway this is getting long already and I have just started!!! Other than that I have basically been pretty healthy. About 5 years ago I started getting awful headaches that have never fully gone away. It is always there. I then started having neck and shoulder pain and face, jaw pain, ear pain. I went for massages, every x-ray imaginable, cat scans of my brain, sinuses, thought the headache was sinus related but apparently not, MRI's etc. etc. My shoulders and neck ache so bad it is almost dehabilitating(sp). I went to several doctors, ortho docs, neuro's. and everyone said that it was my nerves because I was depressed!!! Well I wasn't or am not depressed just very upset that nobody can find out what is wrong with me (I guess that can depress anyone eh?) They wanted me to go to psychiatrists who only wanted to put me on "Paxil" and I fought it for years. I had acupuncture, sacral cranial therapy, traction, st. johns neuromuscular, trigger point therapy, injections of every kind and even went to a homeopathic doctor. Well here is where it will get interesting to you!!! This doctor right away told me that he thought I had an immune difficiency and told me to go to my own medical doctor and have a liver panel test done. It came back "positive" for "Epstein Barr Virus" and "CMV" virus which means I had or have a double liver infection. This also goes along with "Chronic Fatigue Syndrome". It is a form of mono. It can lay dormant in your system and it comes back on and off. Mine is back more than it is not which robs me of all of my energy, my throat is always sore, my sinuses hurt and my glands in my neck are usually swollen!!! He tried to treat me with all of these expensive homeopathic capsules for about a year and nothing worked. They say there is no cure for Epstein Barr virus. It won't kill you but it is not pleasant. I was also diagnosed many years ago with "GERD" which is esophagitus or acid reflux and I take pills every day for that.
Finally I went to a top Neurosurgeon who told me that in C5/6&7 (vertabraes in my cervical spine) were degenerating and I had bone spurs and arthritis. In Nov. 29 of 2003 I had an anterior cervical discectomy with donor bones and pins and plates and almost 15 months later, I am still in the same amount of pain in my neck and shoulders and it seems to be going into my back now. I get pains in my chest and the pain radiates down into my arm and into my hand and it makes my hand numb and tingly. My skin even hurts on my arms lots of times like it is chaffed and when you tell the doctors that they look at you like you are crazy!!! Well the neuro. doc said that should go away that it was "myolopathy" and it never went away.
Now for the good stuff - the neuro now says "oh I am afraid the operation did nothing, I am afraid you have "Fibromyalgia"!!! What an awful way to find out after having major surgery!!!! In thinking back from my MVP which they say can be related to Fibromyalgia and fibroids in my chest, under my arm in my uterus and all of these other aches, I have probably had fibro for the whole 25 years!!!! I have been to the pain clinic and have had steroid injections, cortozone shots, injections into the back of my head for occipital pain (I could become a doctor myself ha ha). Nothing has worked. I had some medial branch blocks done before and they didn't work but the pain doc. wanted me to try again. They seemed to help a bit this time so on May 17, I am having the nerves burned in my facet joints in between the vertabraes in my neck because he says and my family doc. says I have "Chronic Myofascial Pain" which is what you could have too. I am at my wits end. Every day is a struggle and your story sounds so familiar. I haven't given up yet (I could make this whole story so much longer because there is a lot more but I am comparing what you are going through to my own story. I have insomnia very bad. I take Ambien 10mg every night and I have for about 4 years. I went to a sleep clinic and they told me to just stay on the sleeping pill for the rest of my life!!!! I tried Paxil finally and it put weight on me and my doctor changed me to "Prozac" which they say doesn't put as much weight on you. Anyway I fought antidepressants for years and finally gave in and I am glad I did because it has helped somewhat. I take Fosamax which is supposed to help with bone loss, Lodeine which is a substitute for Celebrex, Glusomanine with Chondroitin,Prilosec for GERD, OPC-3,Noni Juice, Oregano Oil for energy, etc. etc. and I don't know if any of it has helped. I am sorry for the long post but there is no sense in telling half the story. I hope you get some help soon or at least a diagnosis. I hate when nobody wants to listen and we are hurting so much. I am here for you if you want to ask me any questions. I am not an expert but will try to help if you need any advice,
Thanks for listening and take care of yourself
Lyn in Michigan :angel:
Lyn in Michigan
04-21-2005, 10:30 AM
Emaria
Hi, I have been to the hospital for chest pains several times and they can't find anything wrong, they have kept me in overnight and I have had a cardiac work up with a cardiologist several times and they say it is "chest wall pain"!! Nobody believes me and you feel like you are having a heart attack. If I ever do have a heart attack I probably won't go to the hospital that time because nobody ever takes me serious!!!! What a frustrating disease or whatever the hell it is!!!
Sorry again
Lyn in Michigan :)
Hi, I have been to the hospital for chest pains several times and they can't find anything wrong, they have kept me in overnight and I have had a cardiac work up with a cardiologist several times and they say it is "chest wall pain"!! Nobody believes me and you feel like you are having a heart attack. If I ever do have a heart attack I probably won't go to the hospital that time because nobody ever takes me serious!!!! What a frustrating disease or whatever the hell it is!!!
Sorry again
Lyn in Michigan :)
pa235
04-21-2005, 10:35 AM
Hi, I get the underarm pain, breast pain and what I call bra strap pain, from the shoulder down to the breast. I also have the lower and upper rib pain, I have fm for 21 years, myofascal pain and was dxed with costrochondritis a few years ago. This is inflamation of the rib cage, possible you could have this along with Fm.
I am also very sensitive to meds, so only take tyenol and use my moist hot packs.
Hugs, LInda
I am also very sensitive to meds, so only take tyenol and use my moist hot packs.
Hugs, LInda
Lyn in Michigan
04-21-2005, 01:42 PM
Emaria - I really want you to read this!!!! so I am bumping this back up. :angel:
Lyn in Michigan
04-22-2005, 12:09 AM
bump :angel: