Have suffered from severe chronic depression as well as periods of dysthymia pretty much from childhood. Obvious manifestation came at age five when I collapsed after one of my bipolar mom's rages. In just seconds, somehow, my body just shut down and I was paralyzed from the waist down and my hair had already been falling out in clumps but mom never noticed until I was hospitalized. So then later, add years of sexual molestation by my "godfather" in my late teens and many years later after another collapse and serious series of breakdowns and hospitalizations and it was not entiredly a shock when I learned all my "diagnoses" by doctors, therapists and social workers that I was bi-polar "atypical" (according to testing done at Stanford Psychiatric DEpartment or something and later that I had Post traumatic Stress Disorder and that wonderful phrase: Personality disorder. Haven't worked since 2002, battled depression, severe migraines, allergies, and suicidal thoughts and attempts for many years.... but thanks to perseverance and two great therapists and one very good Psychiatrist I am mostly in a good place compared to 2000 to 2011.
In October of 2011 I relapsed into a bad "episode" of Fibro Myalgia that continues today. Am in the midst of seeing docs (primary, psych, and physical rehab. specialist) last week and this. Had an MRI done last week. Referred to rehab specialist to further investigation of back problems that may or may not be affecting my left leg which is very, very bad. Hoping.
MRI convinced my doc that I should see a specialist... NO Kidding! So he put me on Neurontin and it seems to be helpful to some degree.
I am still seeing my therapist even though I had planned on quitting by the first week in October. (It's now almost Halloween, 2012.) I suddenly realized I really hadn't talked as much as I needed to about personal intimacy issues with my husband, friends, and my therapist herself.
Soo somehow I have to figure out a way to pay for a few more months..
Fibro episode stopped after a year almost exactly. I know. Very strange. But my left leg was still very bad. Doc looked at MRI results again and said, yes, you have a pinched nerve from compressed lowest three vertebrae. Nothing to be done except to up the dosage of Neurontin which helps somewhat. It did help with incontinence. He asked me first thing and I was so relieved as wetting the bed at 57 was frustrating and mystifying and I never thought it might be related to my back pain, or whatever. He said what happens is that the nerve or nerves that are affected lose the ability to signal to your brain this particular message!
Thank goodness. Now no more trying to hobble to the bathroom with my cane and sometimes not making it in time or just barely making it -- I wore maxi pads to prevent embarrassing situation that might occur when in public.
Dealing with neuralgia is much the same as dealing with Fibro only the pain is mostly concentrated in my left leg... i.e. my knee (!!), my hip and groin muscles which makes walking very painful when that is acting up. I have to use a cane because my knee often just buckles and I yelp like a kid or pup in pain but the cane holds me up. People are very nice in public, like where you might be looking stuff in the same aisle at the market and suddenly it happens and I yelp (can't stop it....it just comes out and I have no control over it. emoticon sad But people often ask if they can help me or ask if I am okay.
So I have taken to using those electric carts on bad days but those things are so crazy. They start up with a lurch sometimes and burst forward with a lot of speed so you have to made sure no one is near you when you start it up and drive carefully trying really hard not to run anyone over! It does have a slow speed by not pressing the lever so much but it's not exactly like having a pedal and steering wheel for control. Still, I am grateful they are there at all.
Exercise is important with neuralgia as it is with Fibro. Too much and you'll regret it and too little and you'll regret it. What's too much or too little is often hard to figure out. It changes daily and weekly. That can get old and I have to watch for mood changes and take care of making sure a funk doesn't turn into something more. For me, that means, connecting with a friend either on the phone or in person. Or, going to youtube or wimp.com or the scores of other websites friends share on FB. Humor is my best friend and I try and keep it close by at all times.
Neuralgia is constant when walking or standing now and wakes me up sleeping when in certain positions. Same in sitting back on the couch -- positioning is harder and harder. I feel like my hip bone in my groin is loose and it "catches" as does my knee now. Everyone keeps saying to me, "There must be something you can do!" I suddenly realized I might be able to get proper lifts for all my shoes if I had a prescription for them so going to see doc tomorrow. Scared the damage is already done. Just scared in general. Where is that warrior woman in me? She's exhausted, spent and lying in the desert shriveled and dying. Guess it's good that I feel she's dead yet. ! Oh Gah. This sounds so depressing. I shall have to rewrite it later.
I went to NY where I grew up in September and my sister, best friend and mom were shocked at my condition as they hadn't seen me in a year. My sister made an appointment with a spinal surgeon/specialist from NY Special Surgery. After examining me he was 99% sure I had severe arthritis in my left hip so he sent me for a new X-ray (the MRI from Kaiser from the fall of 2012 he said was ridiculously bad). I went back to Dr. G in NY and it was easy to see that my hip "was long overdue" for a hip replacement. Ugliest sight I ever saw in my body -- bone on bone, no cartelage left and bone spurs all around.
Had an "Anterior" hip replacement done on Dec. 2nd, 2013 and the X-rays came back yesterday after a visit there and they are "perfect!" I can walk without pain! I still need aids (cane or walker depending on how far I have to go) when out as I am still not strong enough to go for long periods of time without. Inside the house I have permission to walk around all I can without aids!
Moral of the story: Be your own advocate. Listen to your friends and get a second opinion. It's hard to think when you are sick and/or in chronic pain so reach out to loved ones and friends for help when needed!!!
July 17, 2014
Realized recently that my incontinence was/is caused by physical fatigue. The year and a half before I got my left hip replaced I was in a great deal of pain, day and night. The pain had started six months before that but it heightened a great deal as time when on and I couldn't even use thick mentrual pads to contain it but had to wear adult diapers for 18 mos.
All the doctors that I saw in the time had different explanations or lack of explanations. I slowly realized in the last six months what the key was on my own. I stopped being incontinent about 3-4 weeks after my surgery on Dec. 2nd 2013. The only time I have problems with it now is when I am overtired, i.e. overdone it physically and emotionally. Usually a regular pantyliner is enough to catch whatever I can't quite make it to the bathroom in time except at night. About once a month I wet my pad, undies, nightgown and a little of my sheets but nothing terrible. It's kind of like a warning --- to stop and take stock of what I am trying to do in one day or week.