My first post

Hello everyone! I'm sorry this is so long.

I stumbled upon this website during my research and it seems like an active, helpful place that I would like to be a part of. My journey to here started in my mid- to late- teens with mild to moderate back pain. I am 5'11" and have scoliosis and kyphosis (nothing horrible, you can't really tell, just looks like I have horrible posture). I was told by doctors then that it was just something I had to learn to live with. The pain was mostly in my low back, but I also got pain in my upper back on occasion. I have also lived with migraines my entire life, that I didn't realize were migraines until I was 20 and moved in with my (now ex) husband. My mother suffered from migraines my entire childhood, so I thought puking and the extreme pain and sensitivity were just part of having a headache.

As I stated, I was married at 20 and it wasn't the perfect situation. There was a lot of stress and anxiety on top of my pain, and I developed severe depression (I have had bouts with depression my whole life, including two suicide attempts in my teens). I was treated by my doctor for the depression at around 22. When I was 23, I had severe gall bladder attacks and had an emergency Cholecystectomy. I lived in Maryland at this time. I also started seeing an orthopedic doctor who ran MRIs and other tests. He determined I had a large herniation at L5-S1, as well as two smaller herniations. By this time, I was having pain shooting down my legs. I tried chiropractic and physical therapy before giving in and having a microdiscectomy at 24, which brought relief for all of two weeks before it reherniated (according to the additional MRIs and tests, so many that I developed an allergy to the IVP dye that is used).

Shortly after this surgery, my husband left me, taking his insurance with him. I guess he couldn't deal with the medical issues. He walked out the door and I've never seen or heard from him since. I got pregnant shortly after he left (whoopsie, but not really ;)), and so doctors and tests for my back were put on hold. After having my son, I didn't have insurance. As a single mother not making much money, I couldn't afford to pay cash for medical services, but didn't qualify for state insurance (or anything, for that matter) so I went without treatment for a while.

When I was 28, I obtained insurance (albeit crappy) and started seeing a doctor in West Virginia, where I lived at the time. By this time, my feet are beginning to lose feeling. I had difficulty walking and caring for my son. The doctor ordered the standard MRIs and such, and sent me to a specialist (I don't remember what kind) that did some test on me to check my nerves. According to the test, everything was fine with no nerve damage. The doctors didn't seem to want to do much more than throw pain medicine down my throat, and they almost acted like I was lying to get narcotics. (Which I was not and am not. Narcotics that I have had -lortab, oxycontin, codiene, etc., barely touch the pain.) I lost insurance again when I was 30, which halted everything yet again.

I am now 32 (almost 33). I have since gotten remarried and we have recently moved to Ohio. Our insurance is due to start next month (I can't wait!). I have been having horrible episodes lately, and have gone to the ER once and to an Urgent Care place (where they wanted me to be ambulanced to the ER immediately, I refused due to the cost). They gave me some pain medicine, steroids and Neurontin. They seem to have helped, as I am able to move around without tears most days. However, there are still too many days of debilitating pain. Thankfully, I have a helpful husband and son. Sometimes I wonder how much longer I can live like this.

Like most, I have done a lot of internet research trying to determine what is wrong with me. My symptoms are so many and broad, that I can't find many answers.

Here are my problems/symptoms:
I have a hiatal hernia and stomach ulcers, which brings terrible heartburn.

I also have severe IBS (three people have been diagnosed with Crohns in my family in the past 3 years as well). I don't remember the last time I had a normal poop. Usually it's putrid diarrhea that can clear the whole apartment. (TMI, sorry.) And I have to use the restroom practically immediately after eating.

I have a history of depression, but I'm pretty sure it's more like bipolar disorder. I go through manic and depressed states often.

The migraines are still around, not as frequent as they had been, but at least once a week I get one.

The back pain is atrocious. It is definitely my biggest complaint. My lower back is in constant pain, no matter what, and I have VERY little feeling in my feet all the time. When I have a 'flare up' of pain, my back hurts so badly I am incapacitated. the pain is all over, but the most pain is in my low back/pelvis. If the flare up lasts longer than a few days, my upper back begins to seize up and spasm like my low back, with pain, numbness, tingling and loss of strength in my arms and hands. My shoulders and neck are affected as well.

I have pitting edema that I have had for years and years. When I asked the doctor about it, he said it was nothing to worry about and recommended taking water pills if I wanted. I have an overactive bladder and pee constantly as it is, so I didn't take the water pills.

I have gained an enormous amount of weight due to the pain and not being able to be active. I used to be very active, but now most days it's all I can do to get up out of bed and complete my 'housewife' chores/errands/duty.

I experience times where my vision will shift back and forth. It is a very small shift, but to me it looks like everything is moving side to side each second.

I have a strange rash/discoloration on my feet that seems to get worse when I have an episode of pain.

I guess I'm here to see if anyone has any suggestions or ideas. I will be getting insurance next month, and have the task of finding appropriate doctors in a completely new area where I know very few people. I've gotten to the point that I feel that living is a chore. I'm honestly almost suicidal, but I know I would never go through with it because of my son.

I know this is really long, I appreciate everyone that reads it, and I look forward to becoming a part of this community.

Robin

Hello and thanks!

I am not currently on any pain medicine, because I don't have insurance yet. The last thing I was prescribed was Lortab 10 (at the Urgent Care place a couple weeks ago). They took the edge off, but that's it.

I am on a very low dose of neurontin (600 mg a day). I'm not sure if it's helping, or if the relief I have gotten in the past week has been from the steroids.

I have not been tested for fibromyalgia. Is there a test for that? Last time I had insurance, there wasn't. Doctors have mentioned it, but it was more of a 'we don't know what to tell you, so we'll use fibro'.

I am sure I have a pinched nerve, from the herniations in my spine.

I have used muscle relaxers. They don't do much for the pain, but they make me sleepy.

Massage helps, if it's done right and regularly. I was a LMT and had many massage therapist friends in the last state I lived in and they took good care of me. I'm getting a massage tomorrow in hopes that it will help. I wish I could remove my arms and massage myself!

Heat is terrible. It makes the pain worse and makes me have to poop. (TMI, my bad.) Ice helps sometime, but only if I'm constantly on it. I've also tried exercises, yoga, stretches, etc. Again, it just makes it worse.

I appreciate your post!

I know, and appreciate your concern and help!

Years ago, right after the back surgery, they had me on some sort of pain patch. I was on high doses of oxycontin as well at that time.

My blood work always shows elevated white blood cells. Every single time. Highly elevated. At first, they thought it was something like leukemia and sent me to an Oncologist. I didn't know what an Oncologist was and I googled it and cried and cried. Thank God those tests came back negative.

My mental state is quickly deteriorating. I have problems with my memory, organizing my thoughts, etc. Stress makes the pain and other problems considerably worse. In September my mother was in a coma in the hospital. That flare up resulted in the ER visit (which I had to pay cash for with no insurance) because I couldn't walk. They had to wheel me from my car into the hospital.

Thanks, Tina!

I'm hoping that the move was a positive thing. Luckily, we live just a few minutes from the Ohio State University Medical Center, as well as many other doctors and specialists in the area. I hope they can give me some answers.

I hate that all of these people are in pain like this, but it's nice to know that I'm not alone. I don't have a lot of adult interaction during the day, so I look forward to getting to know the people here!

Robin

Thanks, Brett! Nice to meet you.

Yeah, my ex was a douchebag. I've raised my son completely on my own with no child support or state assistance. It's been quite a challenge. My current husband moved in when my son was 4 and has taken on the role of dad. I'm so grateful to him for that. I can't imagine keeping my son from his biological father for silly reasons. His biological father never made an effort and hasn't seen him since he was 3 months old. My son is almost 7 and my husband is the only father he's ever known.

Hi Vickie!

I appreciate your advice and suggestions. As soon as I get coverage I will contact you for the recommendations you suggested. I live near Columbus, but would be willing to travel literally anywhere I need to.

I have tried many different diets for my intestinal issues to no avail. I had issues before the gallbladder being removed, but they've gotten worse since. I've tried eliminating gluten, raw diets and was even strictly vegan for several years. I know what I can and can't eat to avoid horrible attacks, but nothing seems to help completely.

Same with my migraines. I've run the gambit on medicines, both over the counter and prescriptions, and while some things help, most do not, or the side effects are worse than the migraines themselves. Stress seems to be a huge trigger for everything.

I appreciate your welcome and advice! Everyone seems really helpful and nice here!

Robin

David,

Thank you so much. It is truly a relief to have a place where I can come for advice and to vent. I hate venting to my husband about it because it bothers him greatly that there's nothing he can do to 'fix' me.

Robin

Lexi,
My brother and cousin have Chron's disease and you're right - high fiber is bad for people with Chron's. So is dairy and gluten and lettuce and other raw veggies. It's horrible! I am going to look into altering my diet in ways I haven't before. :) Thanks!
Robin

I do not have Chron's disease (at least, I haven't been diagnosed with it), but I don't drink anyway.

Hi Walking Dead (nice name by the way - that is currently my FAVORITE show!)
First of all, let me welcome you to the group - this is a group of wonderful, caring people so feel free to vent at will - like you, I do not like complaining to my husband, or my children (who are 11 and 17) or pretty much anyone else.

Anyways, I have been dealing with my cp since my early 20's, and just recently turned 35, so we have some close simularities there. ;o) My husband, who has been around for pretty much the duration, gets so worried about me that he actually gets irritated if I, say, try to load the dishwasher, or get the laundry, or sweep (oh, but he is just fine if I am cooking, lol) I basically have to give excuses for why I need to do it which is not something I ever imagined I would be doing...I mean, really, a good excuse not to clean? And I am making excuses to clean? But he also gets worried about me to the point where we don't even go bowling or playing pool and many other things anymore. So yeah, I don't want to complain to him.

My back is my true source of cp. Even on several meds, my pain levels are usually around 3-7 depending on what I have been doing. I have 3 bulging discs and a tear in my low back, 4 severe broad bulges in my neck, sciatica, facet joint syndrome, and significant osteoarthiritis - I have been told just the arthritis alone is what would be expected to be seen on a woman 70-80 years old, or a career linebacker. I have had no injury to explain what is going on in my back, and no family history. The only thing is that I was given depo-provera as a teenager after having my oldest daughter. This has now been black-boxed for causing bone issues. My left foot goes numb at some point every day and my right shoulder may start hurting, and sometimes even my elbows and hands join the party. Hands will go numb, while the arm and shoulder itself will feel a throbbing, almost bruised type pain. I don't know if you are experiencing anything like this, and I promise there is a point to me running my mouth (well, fingers) like I am.

I was diagnosed with my lumbar issues in my 20's. No surgery, even with the numbness. Like you, any time I had a flare, it would get into my upper back and neck. Just in December, I got my first ever MRI of my neck - and it wasn't my low back causing the neck symptoms - I found out that my neck is so much worse than my low back. If you are having symptoms in your neck, make sure to let the doctor know and request an MRI for that area - I wish I had done that sooner so I could have avoided some major changes I made that now is costing me big time. Depression goes hand in hand with feeling like this all the time, so don't give up and know that we are all here for you.

Now the weight - I gained about 70 pounds due to my condition over that past several years. I lost it over a period of 4 months (january thru April 2012) by using the Medifast diet. I never would have tried this diet except a friend bought the food and found she couldn't stick to it, so she gave it all to me. It worked better for me than anything else I had tried so I stuck with it. Also, I have kept it off since April so it really does work and as long as you eat right after the weight is gone, it stays gone from my experience. With your IBS I am not sure if this diet would be okay for you, but I just wanted to throw it out there for you. I am about to start it again to lose a bit more to see if that helps my back at all.

Like others who commented, I am also on a variety of medications to address the different issues, and while my pain is never fully gone, it is enough to take the edge off so that I can continue to work. I take the gabapentin also, but I take 1800mg per day. I also take Tramadol, oxycodone, skelaxin, and flexeril.

Anyways, welcome to the group, as you have discovered there are alot of us here that can relate to what you are going through!

Sore-

What doses are the flexeril and skelaxin? I've been on both- seperately, and only the flexeril worked a little, but now I'm looking for another alternative to reset my tolerance to the muscle relaxer.

What started you taking both? Do they boost eachother? Really curious!

That's a really good idea.