I have been having test after test and my doctor cannot find anything abnormal so far. It is so frustrating and I just wanted to break out crying today in my doctor's office. I'm wondering who out there is in the same boat as me. I really need some support and kind words from those of you who can relate. I would appreciate any responses...
Do you have Fibro???? I swear for years I just would cry for hours the pain was so bad and times I didn't even know where the pain was all I knew for sure was that I hurt my whole body... The hot tub alwas would help then it broke!!!! My husbond installed a whirlepole tub in our bathroom... now he says that I like the tub more than him and at times I really believe it too.... a quick tip soak in a hot tub with 1/2 cup of epson salts and it really does relax you and helps to sooth the pain.... Bless you and I don't really know why you have bad Pain but no matter what the reason may be the important thing is to calm the pain down....
I now have a Morphine pain Pump Installed andthis does halp with the chronic pain ...
If I can help in any way bless you
I've been there. Even though I have specific problems with my cervical and lumbar spine they never found anything specific with my thorasic, and the cervical is too high up to be causing it. I'm very fortunate that my internist is willing to work with me on this. Right now we're working on the assumption that it is myofascial because that's what all the symptoms point to, and everything reasonable has already been ruled out. She's treating the pain and muscle spasms with meds, and I'm seeing a massage therapist at least every two weeks. I'm considering going to a chiropractor, especially with the spine pain form class last week, something may be out of place.
It's so frustrating when they can't find anything specific. I had two different PM docs tell me "it's your gallbadder". It's not, I would have been very happy if it had been, they can take your gallbladder out, at that point I would have let them do it immediatly no questions asked. I've had sonograms of the gallbladder and liver, a cervical and thorasic MRI and a CT scan of the right side of my body between my neck and legs. Nothing showed up, but I continued to have severe muscle spasms and pain 24/7 and swelling on the right upper side of my ribs right under the bra line. Apparently I also have quite a number of trigger points in the area, some of them so large my husband was concerned they were tumors.
Hang in there, hopefully they will figure it out soo.
I went through the same, test after test. Although I knew something was really wrong nothing definate was showing on any tests. Although what the doctors thought was a small problem ended up being the cause & when an MRI was repeated (cervical) it had progressed. Still the problem was worse then the MRI showed when the surgeon got in there. Yet I know how you feel I honestly thought I would loose my mind & I think at the times the doctors thought I did,lol. Are you getting all the reports from your tests & what tests were done?
I cant remember exactly what your having problems with please refresh my memory.
The not knowing is as bad as the pain, I know. You ask yourself how can you fix something when you dont know whats wrong. I thought It was only me & I was some kind of freak or something but sometimes problems take time to show, yet we are left in alot of pain. Your not alone & I know its frustrating but hang in there, in the mean time I am here for you. Sammy
I had a cervical spinal fusion at C5-6 1 year ago. I had severe right-sided scapular pain, and a discogram showed a very large tear in my disk and everything had leaked out. We figured that was the problem, and did the fusion. That pain is now gone, but now I have similar, but more expanded pain exclusively on my left side. I have scapular pain and pain down the inside of my arm and elbow. After I have been up for a few hours, my neck muscles burn. It is much, much worse when I am sitting. Standing and walking are the best things for me to do in terms of my pain. That's a real bummer because I have a desk job. I have had an MRI (but not recently), a bone scan, an EMG, x-rays.
The doc said she might want a CT with reconstructive views to see if my fusion is solid. If that shows that my fusion is solid, then we basically just resolve to try to effectively treat the symptoms. My belief is that the pain has to do with the fact that my surgeon tried to change the curvature of my neck when he fused. I have/had a reverse curvature in my neck. My surgeon said "we'll just straighten that out." What happened was that C5-6 was fused with the angle going one way, but the rest of my neck is still trying to curve the other way, creating sort of an S curve. I have had severe pain ever since I came out of my cervical collar after surgery. I would say it has gotten a little better gradually, and I am still trying out different medications to treat the pain. Sorry for the long-winded answer...
I just want to say that I understand your frustration. I will be entering my 7th year of chronic pain next month and still do not have a diagnosis. I live day to day with the fear and anxiety that my doctor will call and say, 'sorry we can no longer give you medication because we have no proof that you even have pain.'
I hope things improve and you feel better.~Mush
undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
Thank you. I fear that someone will say "we will not treat you anymore because there is nothing wrong with you." I think my doctor is very understanding, but you never know. I have been seeing a psychologist specializing in pain. I was convinced that my problem wasn't psychological, but now I am starting to wonder if I am just crazy. If so, this is a horrible way to lose one's mind. I'm trying a new LA med again, and I am hopeful that it makes a small difference. Thanks for sending your words of support.
You are not crazy and do not let anyone tell you that you are. I was in the same position 7 years ago. I had been sick and in pain for 15 years off and on with it getting progressively worse. I fought through it to graduate college, I fought through it to work. I was exhausted and in pain and everything showed nothing wrong. I too began to believe I was crazy, really and truly crazy. I had to quit my beloved career in 2001 and there was nothing wrong?
My husband got transferred and I saw a new doc that was an Internist rather than the HMO jerk I had been seeing where we used to live. He also believed something was wrong and sent me to 7 specialists(including a pain management thank God! Although I couldn't get in for 3 months, the internist gave me something until I could get in). I was so hopeful that one of the specialist would find something. It turned out I was diagnosed by a fluke during a biopsy looking for something else. It was bittersweet, I WASN'T crazy!!! But I now have an auto-immune disese that I will fight the rest of my life.
You never know how you will get diagnosed. I know it's exhausting, but don't give up. You know your body and if something is wrong and it doesn't feel right, then that's how it is! I knew what it felt like to feel good and healthy, and I KNEW that I did not feel like that anymore. I will never let anyone put doubt in my mind again.
I'm sorry you are struggling and in pain and I hope you can get some answers or at least find some meds that help.
MY worst fears as well. I have scar tissue under my scapula that you can see, and some discs in my neck that are compressed, but I feel the same way. The worst thing is to have to go to a new doc and not have anything concrete to show them EVEn with the films. Hang in there...Youre not alone by a long shot, and you have us!
Toon, You know I read & read your post. My surgeon told me twice pretty much after a year is up what ever pain is left from the fusion is likely to be nerve damage. He also made it clear I could still have pain no promises on that. Also look at my surgery, on the MRI everything else looks peachy, but when he was in there he found C4 & 7 are not so hot. I had 5&6 done. So according to the MRI & everyother test it would have appeared to be fine. Never doubt yourself. These tests are not 100% accurate, that just proved it. I had so many test & seen so many doctors its unreal & I remember laying in bed thinking could this be in my head? Those doctors had me doubting, I would vomit with the pain, still did not convince some. A good doctor knows, it shows. I had one that would walk in & take one look & say I am not touching you today your in to much pain. Hang in there girl. The worst part is not knowing & I mean that. I feel for everyone of you who suffer & dont know the cause of your pain. I will keep you in my prayers & of course you know your never alone. God bless Sammy
I am so sorry that your pain is so bad. Everyone is right do not give up! Maybe it is time for a new set of eyes to look at your case.
The worst part of this deal are the "what if's" that our head goes through! The "oh-No's" we conjure up in our heads...
Some of the stuff you talk of sounds like Ulnar nerve pain when it runs down your neck and into the inside of your arm....What did they say about your EMG...? Wven though I personally dont thik those or largley accurate...CT and Disogram while the discogram is very painful i think it is pretty accurate givven the patient can differentiate the pain between "oh..I have needles in my neck, or back" from "Omg....that is the pain I feel every day"
Your pain is your pain and it [B]is real[B] No one knows your pain and body better then you....
Since my ACDF last Sept...I have a marked improvement on my neck pain but it can flare up really bad.....and I am still left with some scapular thoracic pain that can be dabilitating...
It has now bee diagnosed as Myofacial pain but U have to say that is largely part of the reason I am still on meds at this time...
I will surley send out the good vibes and be here to suupport you as best I can...
I have to agree with everyone else that you should never doubt whether the pain you are feeling is real or not. The pain is definitely real, it just can not be detected by any test at this moment. I haven't gone into my complete story but I started having pain in my left foot in may 2003 and had conservative treatment until I couldn't stand the pain anymore and had surgery in oct 2003. Well, while i was recooperating from that surgery I started to have the exact same burning pain in my right foot. I thought that I was going crazy. I mean how could the exact same thing be going on in my other foot. So I did not wait around to do surgery in my right foot, had it done in january 2004.
Long story short fast forward through 3 more surgeries about 10 surgical cryo-freeze procedures, countless injections, epidural injections, countless medications. I am still in pain going on 6 years. I have had several doctors tell me that there is nothing else that can be done to fix the problem because it is damaged nerves. So everything looks fine on xrays, mri's, and emg's. However I have chronic pain. That is actually one of the definitions of chronic pain is having pain that lasts after an injury or surgery has healed and there is nothing physically wrong that can be seen on any test. It's like the site of pain keeps sending the signal to the brain that "the pain is still here, the pain is still here".
I have been like you and thought that I was really going crazy especially when the countless meds I had tried would not even make a dent in the pain. Luckily what I take currently does help.