Discussions By Condition: I cannot get a diagnosis.

I am so tired of pain

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: falfiee
  • August 17, 2008
  • 04:06 AM

First, let me apologize, this is going to be long, but I so need to vent my frustration. My problems started about 3 years ago when I suddenly began having severely sharp pain which seemed to radiate from my knee to my ankle, only at night. It felt as though it was deep in the middle of my bones and I could not sleep for it. I went to my GP who tried giving me various pain meds such as vicadin, which didn't even begin to touch it. Meantime I limped along, exhausted and dreading bedtime. Unfortunately my GP was quite old, went to him for 30 years and he became disabled and was put in a nursing home by his awful son, but that's another story. I had to change doctors and began going to a woman my sister goes to. This was during the second year of this going on. She prescribed Nerurontin and also diagnosed me as being Bipolar, which I may or may not be as I was so depressed from lack of sleep and pain, for which she prescribed Seroquel. The pain literally stopped! I was estatic! It was heaven. For about 3 months and then it was back with a vengeance along with lower back pain. She tried doubling and then tripling the neurontin to no avail. Could not tolerate triple the dose, it made me fuzzy is the only way I can think to describe it.

Anyway, this went on for another 6 months until last August when I literally went to pieces in her office. I mean literally I ended up in a sobbing heap on the floor of the examining room, so she took me off work and sent me for xrays and then an MRI. The xray was not entirely surprising, I have arthritic changes and a slightly bulging disc. The MRI shows stenosis, so she sent me to a neurologist (took almost 8 weeks to get into her) but she looked at the MRI and said I have 2 exposed nerves and also said it showed a tear in the spinal tissue. She recommended an epidural injection to try to help the pain, that took over a month to get arranged and during that time Met Life made me go back to work. When I finally got called with that they scheduled an appointment for the epidural injection It was less than a weeks notice and I got wrote up at work for not having scheduled it by the 10th of the month before, which is what my manager requires. (this manager had also wrote me the month I went out on fmla for refusing to run during a team meeting exercise)

I had the epidural and it was awful, it was painful and during it pain shot down my left leg with which I had not had any trouble with. I swore I would not have another one and I would just have to learn to live with it. No way was I risking more pain, I had enough already. They did finally give me a note so work would let me have a chair so I can sit and rest once in a while when I'[m with a customer.

In the meantime it is now very uncomfortable to drive (and I have an hours drive both ways to work and back), it causes my back to hurt, pain starts shooting down my thighs, my buttocks, between my legs and my feet go numb and I end up with a throbbing headache.

About a week ago, I was at work, actually it started out to be a pretty good day, then I noticed just above my right knee, all the way around my leg in about a 3 inch wide area, it was numb. I thought well, this is something new, how weird. Then my left foot and on the inside of my left leg up to my knee went numb. It sounds strange but at this point, well, I'm just almost fasinated. I'm thinking wow, this is just so weird. I walked over and sat down and sent my husband a text about it, again just saying how weird this is, then I got really thirsty, so I got up to go behind the wall to get a drink and had to literally think about moving my legs, they felt, almost wooden is the only way I can describe it. I'm still kind of fasinated at this point and again thought what the heck is this nonsense, so I decided maybe I better let my manager know, my husband was wanting to come and get me because he was concerned, although at that point I wasn't concerned at all, just almost mesmerized. So I started back to the back offices and could barely walk, I mean I had to force my wooden legs to move and by the time I got back there, my left cheek had gone numb. He was in his office with someone else, I don't even know who it was and looked up and exclaimed are you alright. I told him my legs were numb and at that point started to collapse and then became very nauseous. They got me into a chair and wanted to call an ambulance but I wouldn't let them. At this point I'm scared, I know my husband is on his way, the right side of my face had gone numb and I thought I was on the way out. As strange as it sounds, I didn't want to die in an ambulance with strangers. By the time I got to the er my legs were not working well, but a little better and the numbness in my face had moved to the top of my head, my forehead and my nose.
My husband went in to get someone with a wheel chair and honestly, this had to be the worst er anywhere. He wheels me inside puts me in a line and leaves me, when I finally get up to the window and we explain what is going on the RN see's someone behind me, tells us to wait, closes the window and opens the window behind me and starts checking in people there! I couldn't believe it and had to keep trying to calm my husband down. She finally comes back to me, takes my name, and of course my insurance card, gives me a pager and tells my husband to take me to the waiting room. Almost an hour later, they come and get me, take my blood pressure and temp and finally decide to take me back to a cubicle where I wait another 45 minutes for an ER doctor who tries to make me stand on my toes (I couldn't) on my heels ( I tried) and orders a brain scan, lung xrays, an EKG and blood work. 3 Hours later she comes back and wants me to have a stress echo because she says her concern is my heart. I can walk, but very slowly so they decide to do it with drugs, not a fun event. Then another 2 hours goes by and a nurse comes in, tells me my tests were fine and discharges me. By this time my kids are there, and furious, my husband is furious, I'm drained and I just want to go home, it's ok if I die ( I didn't verbalize this to my family of course) cause I'm just tired of living this way. Life has really become a burden. I mean come on, if I sit very long it's uncomfortable, I can't walk very far, I can't sleep for because it's worse at night, and now my durn fingertips are numb all the time.
So now I have another appointment on Sept 11th with the neurologist which I really think is a waste of time, but I'm going to try it, and I think I'm going to tell her, if she can't fix me so I can comfortably work and do my job, if I can only sleep after I'm so exhausted my body has no choice, if the little time off I have with my family I'm so wore out I might as well not be there, then it's time for this old mare to go to greener pastures. I've never in my life had to ask someone else to lift something or had to wait for one of the kids to visit so I could ask them to move a sofa so I could vacumn, and half the time I don't even have the energy left to do it, I'm so drained. I can't let my husband do it, he's had 3 heart attacks, not to mention losing a kidney to cancer. I have to work to keep insurance for him. I'm just at the end of my ability to tolerate it.

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5 Replies:

  • Hi-I feel so bad for you. Your story amazed me as I could have written it. Please look up Arachnoiditis or adhesive arachnoiditis & see if this fits. A particularly good site is (I believe) cofwa.org. They have much info & even a support group. One of the Drs who have a paper on this site even has this herself. The best way to diagnose is MRI of spine, especially with contrast. Beware though that many Drs have no idea what this is & think you are speaking alien when you mention it. Read all you can to educate yourself & possibly print out papers to take with you. (I know alot of Drs don't like us to research on the net & diagnose ourselves so we have to tread lightly) Good luck to you.
    Anonymous 42789 Replies
    • August 17, 2008
    • 06:07 PM
    • 0
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  • My grandmother had a bad experience with that injection, too...anyway, the Americans with Disabilities Act gives you rights at work and you can file if your employer does not make allowances for your present disability. If you are not able to work any longer, you may want to inform your doctor that you need to file for disability through social security. It sounds like it is not fair to your employer at this point, but only you can decide.When the blood work was done in the hospital, how was your blood sugar? You stated you were really thirsty and almost passed out. I am wondering if you are diabetic?You need to follow through with the neurologist; she knows you have a problem in your spine and perhaps elsewhere. One episode sounded like you had a stroke, so you need to be evaluated for that...but maybe it was diabetes or a reaction to medication???After determining what your problem is, and even right now, you might want to practice and learn EFT:http://www.emofree.com/ http://www.gloriaarenson.com/learn_eft_emotional_freedom_technique.html You might try acupuncture or chiropractric to see if they can help you but you really need to know if you are diabetic. How's your blood pressure?
    Monsterlove 2921 Replies
    • August 18, 2008
    • 05:11 AM
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  • I doubt if this is it.. but a couple of things you said made me think of MS
    taniaaust1 2267 Replies
    • August 18, 2008
    • 01:02 PM
    • 0
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  • As some one else mentioned-it does sound similar to MS. MS & Arachnoiditis have mostly identical symptoms but are from different causes. I hope you look up the site I mentioned. Your symptoms point to it in so many ways. Your spinal problems-the tear especially-lead me to think this. The epidural, which itself can cause Arachnoditis, may have further damaged you--especially when you mentioned the problems it caused. The information & symptoms are too lengthy for me to list here. Just google cofwa. Many uninformed Drs & others interpreting your MRI will never look for this specifically which is why many persons afflicted take years to be diagnosed. Please, please look into it. It would be wonderful if you do not have it but could save years of Drs scratching their heads.
    Anonymous 42789 Replies
    • August 18, 2008
    • 09:54 PM
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  • Thank everyone for their replies and suggestions. I am investigating them all. As far as my blood sugar I'm not sure what it was or if they even tested it. When the RN discharged me she said it didn't appear that I had a brain tumor or that I had had a stroke and that my stress echo was in the normal range. The lyme disease is interesting, I have a lot of those symptoms but I'm not sure, does it cause back pain and radiating leg pain? My paternal Grandmother died from complications of MS so that also gives me pause. I don't think that's heriditary, at least I hope not. I've got a lot of questions for the next doctors visit. falf
    falfiee 1 Replies
    • August 19, 2008
    • 02:29 AM
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