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7 years ago  ::  Jul 11, 2011 - 5:33PM #1
Gra
Posts: 2
Hi...I'm new to this thread but not to the pain issue sadly.  I am just glad that I have found others who have to deal with this same thing....it really stinks feeling alone in it all.  

A little about me.....
I have a 23 year old spinal fussion for scoliosis with Herrington Rods and wires from C4 to L3.  I have 2 ruptured discs - L4 and L5 along with spinal stinosis.  I also have the numbness that comes from the disc issues along with the pain.  I have a bladder disorder called IC - interstitial cystitis and the joys of having food sensitivites which makes the pain all that much worse when I eat something I am sensitive to ( ex. gluten ).  
I refuse to take pain medications because I am the single mom to a wonderful 8 year old and do not want to be foggy.  I have tried Lyrica and Cymbalta only to be pulled off because of a nasty side-effect - I had HORRIBLE memory loss.  No clue how I got to work, what I did at work, if I dropped off my daughter at day care, those sorts of lovely things.  I was only on each of them for about 2 weeks.  I take muscle relaxents and pain meds when it gets so bad I can't sleep (I work full time and need to be able to function), but there are still times the pain is so bad I physically can't get out of bed.  PT, OT and massage therapy have all been tried....sadly my insurance says if I wasn't fixed in 12 visits then I am going to continue to be broken and will never get well.....so no more of that for me.
I have gotten epidural shots....they have been my life saver.  They don't take away the pain completely, but they do take a large edge off of it.  The only down side is I have severe panic attacks when I get them, so my poor ortho has to deal with me.  He is amazing though.  I have an ortho surgeon who specializes in pain management.  He doesn't want to slice and dice me like others I have been to.  He wants to help me deal with my pain in the best manner possible.  He even gets why I dont take the meds ~ even though he would like me to (keeps me in less pain in the long run??  who knows!!)  Thankfully he hates the insurance as much as I do and keeps trying to figure out ways to get me treatment without dealing with them.

But on the bright side.... I have more good days than bad....I have an amazing daughter who God put in her heart to know when JoJo (as she calls me sometimes) can't bend over or walk or needs my cane or needs her to call someone for help, is more than willing to do it.  She has understood missing out on things bc I can't walk that far or I can't sit in the car for that long.  She is an amazing lil girl....I couldn't do it without her.
 
Blessings!!

Grá 
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7 years ago  ::  Jul 13, 2011 - 1:21PM #2
Al41
Posts: 30

Hi Gra,


I am new as well. I am so sorry you have to deal with so much.  You are very strong and your daughter sounds like she is a super help and blessing to you.


As for me, I have chronic migraines. Most days I lose at least some of the day to unbearable pain, unable to function until or unless some medication works.  Every couple of months I am in the ED despite all of my treatments. I do take medicines but am not too affected to care for my children.My doctors are really careful about that. My daughter is 6 and my son is 3.  Today has been pretty good....the excedrin migraine has knocked back the pain soI am functional for the time being.  I have no connective tissue between C1 and C2,a bulging disc and degenerative disc disease in my cervical vertebrae which exacerbate my migraines.


 


Hopefully we can provide support and understanding for each other.  Most people do not get how extensive and debilitating my migraines are.  I am unable to work right now. It is very depressing when you feel you are not contributing to society but I am doing some minmal volunteering.


blessings to you


al 

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7 years ago  ::  Jul 22, 2011 - 1:06AM #3
karbie
Posts: 3,329

Every day either of you struggles through, you are teaching your children that despite the pain, you do as much as you can for them. They will grow up with a larger capacity for empathy and the knowledge that people who have splitting headaches and mobility issues are still human beings, who are braver than anyone they'll ever know.


While I'm sure you've tried these, I've found that the cool gel fever pads are a blessing if I can catch one early enough. They stay put and you can get up to 8 hours of cool on your forehead or at the nape of your neck. I called my mother after I'd tried them becauseyou could turn your head without it falling off. Whenever one of us finds something that helps, it goes down the line.


I used to get sent home one day a month in HS due to cramps and bone-killer migraines where I almost hoped I'd throw up to help them leave. Right now I've been doing cluster headaches, but after 40 some years, the migraines switched sides and now I don't know the exact position for my head any more. I take Imetres; I tried tophamax, but the PA at my pain doctor assumed  I wasn't taking Neurontin any longer, but didn't ask. I'd had my doseage cut, so I was using up what I had. These drugs do not play well together. As soon as I reached thefull amount in my bloodstream, I had mild convulsions, hallucinations, fever, chills,nausea, and periods of being dragged under to sleep along with periods that I thought were lucid. I looked at what I wrote then and it wasn't that good. I also told that same PA exactly what he'd put me through and asked him why. He got pale and greenish--but I'm sure that he will never again assume something about a patients medications and prescribe without asking.


My husband offered to take me to the ER but I've been through worse and didn't want a "drug related" trip.


I've had fusion on my upper spine because the upper discs were just rubble and there was a bone spur touching my spinal column. My disks are flattening, so I've lost almost 3 inches of height. I notice it most in the kitchen because I can't reach the things that I used to.


There's a place on your ear lobe, just out from where the ear joins the face that helps cut pain, almost at the bottom of the lobe.I also have an Alpha Stim unit--the next generation of tens units. (By the way, overstock has some tens units or did) You have a smallunit about the size of a cassette player, It has a dial that goes from 0 to just a little past 5. You have 2 alligator clips with felt pads you change, and a solution that goes on your ear lobes. It can be set for either 20 minutes or an hour, and it is portable. Same principle as the tens unit of scrambling the pain signals your brain is getting. I had to give up the tens unit because during hot flashes the electrodes would slide down my back and I grabbed more often than I remembered to turn off the power and grab.


I have arthritis everywhere you can have it. The antibiotic that kills cellulitis also induces an arthritis flair-up. I have fibromyalgia, which attacks the connective tissues and organs.You have my deepest sympathy with the cystitis; the one time I went to a specialist he just chose to ream it all out in one go. With the amount of medication I'm on, he assumed it wouldn't bother me.I am really tired of medical assumptions. I have spinal stenosis, degenerative disk disorder, Irritable Bowel Syndrome, gastric reflux, asthma, and bursitis in both knees and both shoulders. I've had nerve blocks before, but our insurance no longer covers anything that doesn't cure you now. No diagnostic tests are covered, including blood work. When I had a pap smear, it only covered having the slide read, but not getting it out of my body. It's a "maintenance" test and therefore not covered.


I've been told that what I have is situational depression.Apparently anyone in my position would be crazy not to be depressed.


 My son is 24 and married now, but when we talked about migraines, we measured them by how many baby elephants were sitting on my head. He'd just gotten to ride one  and so he understood how big they were. You can use anything a young child can picture.


I'm 56. I have been in pain for 25 years now. I try not to snap at everyone else but I salute you for the efforts you are making to be able to be truly "present" for your children. I know how hard it can be andmay God Bless you both with a very long remission from your migraines. It can happen. For me, the longest one was actually a few years long, and you both deserve it.

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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7 years ago  ::  Jul 25, 2011 - 10:41PM #4
Al41
Posts: 30

Hi Karbie,


 


Thanks for the kindness.I am sorry you are in pain as well.  I really appreciate the words about my children.  I have a disability hearing coming up in Oct.  I hope it goes well.

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7 years ago  ::  Jul 26, 2011 - 9:12PM #5
karbie
Posts: 3,329

Thanks for your kind words as well. I hope that your disability hearing goes smoothly and is approved without jerking you around.My sister got hers on the first try; Mother had to appeal being turned down, but her second hearing did the job. It turned out that the government's doctor had trained under her family doctor and caved as soon as he heard the name. Told everyone that he knew how good her doctor was, and if he said that she was disabled, she was.


I'm not eligible for anything because you have to have enough credits with Social Security and/or have worked in the last 5 years before  applying. I was the Room Mom, Library Mom, Field-Trip Mom, then my son's health took a major nose dive and I had no choice but home-schooling during the middle school school years. besides being told by 2 doctors he couldn't even be inside the school, pediatric specialists are only available during school hours. So by the time we looked into it I hadn't 'worked"  outside the home in the past 5 years.


I think that you will do well, though.


Another site here--the Depression Forum, has a far ranging group of people who support each other. If you feel like checking it out, look over the Front Desk thread--it's our general check in point, and there are some truly sympathetic and non-judgemental people there. Pain is a major cause of depression.What I've always considered to be a truly idiotic medical theory was that depression caused pain, instead of people being depressed because they were in pain. Of course, they used to think that dirty clothes caused mice to spring into existence. And that bathing was very bad for you because soap destroyed the body's natural defenses, probably because people tried to stay far away from each other.


Good luck!

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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