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Just looking for people to relate: chronic pain, spondylosis, bulging discs, fibromyalgia, lumbar stenosis

Started by wezface on 10/04/2013 2:11pm

Hi. I'm new and sort of going crazy, and I'm hoping that having people with whom I can relate and maybe get some tips on how to better manage my pain could help.

I've had lower back pain half my life (I'm only recently 26, so that's not long ,but it started very young). I have been to chiropractors since I was a teenager and was told by one chiropractor, after I had a spinal x-ray that I had an extra vertebra (L6) and it was attached to my sacrum as a transitional vertebra.
Anyway, I've been dealing with the waxing and waning back pain for a long time. I have used braces and Biofreze but had never until recently had a full workup of my lower back.
I have been dealing with chronic nerve and joint pain now for about a year and a half. I was diagnosed with fibromyalgia early this year, and have been on and off so many medications trying to find something that works to manage the pain. It also makes any other pain more intense than it should be, so any accident or injury hurts like crazy.

I was living in California and my mother was really concerned about the pain, so I came back home to the midwest. A friend of mine had done this paleo diet called the Whole30 and had amazing success in his joint pain reduction, blood sugar, bloating, everything, and felt great, so I started on it. I was able to come off the hydrocodone I was on for the fibromyalgia and for about seven or eight days, I felt better than I had in years. Then it all went to hell.

My back started to twinge. A few hours later, I couldn't stand up straight. a few hours after that, I was crying and screaming and pounding on the floor. I'm really used to being in pain, and I've had kidney stones over and over and a ruptured appendix but I had never been in pain like this.
The next day it wasn't letting up, so I went to the emergency room (reluctantly, as I have no insurance but my SSI claim is pending), was given lots of drugs, and still felt awful, so I was admitted. The next morning I had an MRI, which revealed that, for my age, my spine is pretty screwed up.
It revealed congenital spinal degeneration (since I hadn't had any sort of injury, they said it must be congenital), two bulging discs with annular tears and stenosis with the disc material abutting the nerve roots, as well as spondylosis in at least two of the discs. I also have a pseudoarticulation on the right and apparently have no L6 but my L5 serves as a transitional vertebra.
I was kept in the hospital for four days on pain control and was released with 15mg morphine twice daily after they had had me on a Fentanyl drip for three days.
I saw my mother's doctor for follow up and she's reluctant to treat my pain. She renewed my morphine prescription and my other prescriptions, but the biggest blow was that I would no longer be able to get my Savella (for fibromyalgia which was helping tremendously) because it's too cost prohibitive and I had only county health care in California. My Medicaid claim is piggybacking on my SSI claim, so whatever Social Security decides will decide for Medicaid as well, and my claim is still being processed.

Reading through your stories, I feel like a fraud. I see how many of you have been through years and years of this and, comparatively, my issues and pain seem like nothing. But I'm here, away from my boyfriend of five years and my dog and my friends, living with my mother (who is a godsend and has the patience and compassion of a saint), and it's been difficult for me to deal with all of this on my own. My mother worries so much and I don't want to burden her further by complaining. I try to hide the pain but I can see that she sees through it.

I'm almost out of my morphine and have an appointment on Monday but am unsure whether she'll prescribe me anything else. I got her my medical records and told her the morphine wasn't really helping and I think it's even having some adverse effects. I've been trying to find stretches and exercises, I've been wearing a back brace and using Biofreze which helps some, but I still have to spend most of the day flat on my back.

I guess I'm just looking for some people who know how all this feels, and maybe some help staying positive and figuring out how to deal with the pain. I know I need to quit smoking because I've seen that that can make it worse, and I would love to get back on the diet but am having a lot of trouble with all the prep work and cooking involved (though I would absolutely recommend it for anyone dealing with autoimmune issues, chronic pain, or anything else. You can see more atwww.whole9life.com/.whole30). The fibomyalgia, I think, makes the pain worse, and while I was tempted to blame all the nerve pain on the stenosis, my doctor in the hospital told me he thinks I have fibromyalgia as well as the back problems.

So, sorry for the long wind, and hi I guess.

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17 Responses

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What can I say? Other then I do understand your position in this struggle here and the pain you are feeling both mentally and physically and having crappy insurance is one thing I know first hand with me living in Northern California right now!! Medical has changed to partnership health and it sucks even worse! I also am waiting for my Ssi and finally have a hearing date for the 24th of this month and I just pray after a long five years that they will approve it....
You've got a hard road to travel here and being young is just going to make it so much harder I know cause I'm a 35 year old male and the drs hate having to treat me cause I hear them say all the time that I shouldn't hurt this much at my age? Really? Lol I just have to find ways to laugh at them even though its not funny at all what I'm going threw and nor is it for you!
I hate it when people tell me to "cheer up" or "relax" and things like this when I'm in so much pain and depressed because of all the crap I have to go threw because of it.. So without getting upset at me, try to hang in there and try to keep fighting and moving forward with getting the help you need and deserve also try and start a pain diary just jot down what you feel and how you feel and if anything helps one time and not another.. I've found that reading back on what I've wrote sometimes helps and also sometimes reminds me of things I tried that worked or didn't work and my dr used it to help me a few times as well..
Meds are the hardest thing to deal with when you are in pain and dealing with drs, you know what has worked for you and only you know! Sometimes you just have to tell the dr that! Also I've heard that methadone works for some people and its really cheep and drs are ok giving it to people so if you haven't tried that then maybe you can ask the dr about a trial?? I'm on 30mlg of morphine two time a day, I was taking 50mlg but want off of them so I had the dr lower it and I hate it.. It sucks!! But sometimes we have to do things we don't want and I'm sorry you are going threw this!

I am sorry I don't think anything I've said will help you buts it is what I've got to offer you is just a little understanding and hope that you find the help you need.. Best wishes to you and your health

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Thank you so much for your reply. I know exactly what you mean by hating when people tell you're 'too young to have all these problems.' I am so so sick of hearing that, and every one of my doctors and nurses has said it like It changes the way things are. It helps to know I'm not alone in this. I do keep a journal to catalog my pain and find it somewhat helpful. Lately, it's just depressing. But I am trying to stay positive. I wish you the best and hope you get some of your financial help you need as well. I was in Central California and understand how messed up the state's aid programs are and how long everything takes. Good luck!

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hey hows it going 31 male Hamilton Ontario here its been a few years now for me my pain got so bad and no one was helping me I went from doctor to doctor hospital over and over again it got to the point where I took a stake knife and started to cut my leg off because I was mentally loosing it but I deal with a team of 22 doctors and so may things meds iv don't them all I still do many I just got yesterday a surgry set date now its in three months scared shit less so listen man if you want to talk send me your number ill give you a call we can talk I know totally what your dealing with and I think I can be a great help so don't be shy man im here to help

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rubikscube5459@gmail.com sent me an email bypass this site we can talk wezface

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Um, yah! I wouldn't be giving my phone number out at all !!! Just sayn! Geeze I understand people want to help but that is not a safe thing to do these days! I guess maybe because you said you were a female then men think they need to try and get you on the phone and maybe more?
This is a help sight for people who are in pain and don't want the added stress of things like that!! Sorry if I'm jumping the gun here but sure seems fishy to me and I am truly here for pain help and to give HELP threw WORDS of hope and encouragement!

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thanks, George. I was thinking the same thing but opted for passiveness as I generally do. Glad to know there are people who want to use this site like I do, not for a personals board. Did I mention I was a girl? Let's just go with me being an incredibly ugly gay man in a long term relationship.

Meanwhile, my feet are all tingly and my legs are going numb. Is this terribly abnormal? I don't think so, but it wild ease my mind if I knew I wouldn't be paralyzed... again. Cuz that's scary.

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thanks, George. I was thinking the same thing but opted for passiveness as I generally do. Glad to know there are people who want to use this site like I do, not for a personals board. Did I mention I was a girl? Let's just go with me being an incredibly ugly gay man in a long term relationship.

Meanwhile, my feet are all tingly and my legs are going numb. Is this terribly abnormal? I don't think so, but it wild ease my mind if I knew I wouldn't be paralyzed... again. Cuz that's scary.

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Sorry for the double post, and I also would like to mention that if you don't know how to use punctuiation in writing, I doubt your ability to coherently communicate verbally, and that gives me a headache. So sorry, no phone calls for me.

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Really? Does your toes feel like they are going to explode? Numbness and hurts really bad to move them? I have been having so many issues like this for months now and drs are being so slow about tests and such to see what is going wrong! I too am scared of losing my legs and freaking out and trying to research everything I feel trying to come up with a cause! If you seen my post on this site called "what's left after spine surgery" I've wrote too much to read but I explained that I have had the Charite artificial disc placed at L5/S1 in 06 then a partial fusion with rods,screws and cadaver bone at the same level and now have become worse then before and I'm so tired these days and legs are not only numb but full of pain and very weak, this makes for some very hard days and nights with not much sleep but yet I cannot get out of bed because I am too tired and hurt too much and my legs are too weak to move! I've also had spots show up looking like bruises but then vanish a day or so later and also strange lumps everywhere in my lower body!
Ok I'm rambling on like I do here lately, sorry! But I just want to know what can be done just like you... This is a hard spot to be in for sure!
Too funny though about being gay! I laughed at that so thank you! Got to protect yourself these days... My problem is I'm a over caring person sometimes too much for being a man but its just me being me and trying to help others and protect anyone I can from harm or bad situations! Maybe the guys in this world will one day learn to be a gentlemen or maybe not? Lol
Hope things work out for the best for you and you get help soon and if it gets worse the go to the hospital and tell them you lost your Bowles and went in your pants! I know that sounds sick, but they will jump right in and do tests and try to help you then! Best wishes!!

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The research I have been doing suggests that the numbness is coming from the stenosis (I have spinal canal stenosis with three of the four bulging discs and bilateral foraminal stenosis on one). Have you had any recent MRIs? The numbness is probably either nerve damage or nerve compression.

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Actually, after reading your reply again, I think it might be possible it's blood vessel compression? That could be a bad deal... :(sadface

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It has been a little while sense my last MRI, maybe six months or so but that has a lot to do with drs being so slow with everything and then the problems with insurance doesn't make matters any better!! I am going in on the 15th for a myelogram and hoping this test will get the truth on all the problems that are goin on and they will see the lumps that have grown so big they are now showing threw my skin along with the one lump that is directly on my spine! I don't know but just a major hope right now!!
You are also a very strong person to deal with such pain and suffering and doing what you are to make it.. Life has thrown us curves and we learn to live or hit and right now I believe we both are living and hitting at the same time and learning who we really are threw this ordeal and doing the best we can! It sucks to have to move so far away from all that you knew and have to be away from people you love but sometimes that is right where you really need to be to clear your mind and rethink things so that you can rebuild your self confidence and your self-esteem also sometime we can't see that those around us cause us to hurt more do to the lack of love, care, compassion and passion for us so it helps to be strong and BELIEVE in yourself !!!! Gather strength from all that makes you strong and hang in there because you are worth it and worth talking to and enjoyable so smile today and I will too!!
Take care till I talk to you again!

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Hey there Wezface,
How are you doing today? Hope things have gotten better for you and things are going good! I wanted to tell you about a group I've found that has been helping me with things and I think it would be a great group for you as well.. Now I'm not like the guy above, trying to get your personal info or anything like that so no worries ok? Besides, your user name on here wouldn't be the same so there is no possible way I would know who you are unless you told me some how, so if you have Facebook? There is a group called " chronic pain info" look them up and join so you have more people to talk to daily and get ideas as what to do with drs and meds and things like that! If you want? It's just a thought I had that maybe it would help you as it helps me to interact with others and have their thoughts on what we have and what to do about it also things to try that they tried to help with pain and suffering!
Anyways, yes there are thoughts of blood restrictions or nerves being cut off and I'm really hoping next week will give me answers to all my worries cause I can't take this not knowing!! You are still out of your morphine? I hope not cause I couldn't handle the pain without mine even though I have had to numberous times now but it's scary and sucks I know but hang in and keep talking about things to keep you going!! I'm listening!! Best wishes to you talk again soon!

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Thank you for the referral! I may just look them up. Thank you for your kind words and your concern.

I had a PCP appointment today and I don't know what did it, but she seems to have gotten over her "trial" of me (she said she was kind of jaded with chronic pain patients because she had been burned in the past) and prescribed my norco 10s which work much better for my pain. So the last few days have actually been pretty decent; I've been able to walk around and sit and do stuff, which is awesome. And today with the hydrocodone is the best day I've had in a while. It's amazing and I'd love to think that I'm over my hump of troubles with the back, but I'm really just kind of waiting for the ball to drop. Since my condition is congenital and degenerative and I don't know what the rate of degeneration is like, I have no idea how quickly it's going to progress or what happens when it does.

I'm still waiting on word from social security and thus Medicaid, and it's getting frustrating. Every day I get more worried that I'm going to get denied, especially because I am "too young and shouldn't have these problems" which really pisses me off. So I guess with Obamacare in action now I could possibly have an alternative if I get turned down, but if I do, I'm going to call the Medicaid office and beg them to do their own analysis, which is what I thought they were supposed to do anyway.

Anywho, thank you for your kind words again. I sincerely hope your tests reveal what the problem is because that pain you described in your feet sounds agonizing, and I hope too that there's something that can be done for it. You're in my thoughts and if I prayed you'd be in my prayers but instead I'll just send good vibes. :)

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That is awesome! I happy for you that you have had the best day in a long time! Sure makes life look better when you can have a good day to remember what good days feel like but with all pain, you have to take it easy and don't push it so you don't have to pay for it tomorrow.. Have you heard of the spoon theory? Google it! It's and awesome way to explain and understand living with chronic pain! I heard about it on that Facebook page! Lol
Anyways, it sounds like your dr was testing you to see if you would run to the next dr looking for meds but sense you stuck it out then she sees you need her help so she is!! That's great that she is finally helping you although the test sucks to get to that point... I will be going in on the 24th of this month to see the judge for my SSI and I'm hoping it goes in my favor and I finally get it sense I've been doing this for many years now so I deserve it! I hope something goes good for you as well with the Medicaid and SSI so you can contenue to get the care you need and that's what is important is care and to try to help with what you have!
Ok well you take it easy and slow and try to not do to much and we will talk more later.. I've got to try and do some things today so I will look back later till then take care!!

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Holy crap.
The Spoon Theory is the thing I've been explaining to my mother in the exact same way. I've been searching for those words for so long. Thank you so much for introducing me to that.

Not overdoing it is one of the biggest issues I have.. my mom kept telling me to slow down today, but when I feel good I just feel like I want to do everything as fast as I can, not only to catch up on all the life I've missed since my last good day, but because I know it will be a while before my next one. I've been feeling guilty a lot about not helping out around the house when my mother is paying for all my doctors appointments and medication and my food and some clothes from Goodwill since I only brought enough clothes for the short stay I had planned, and it's getting cold, which I didn't anticipate having to dress for.

I really really hope your trial goes well and you get your SSI! Sometimes it takes people actually seeing you in that much pain to convince them, so I really hope this is what finally helps make a favorable decision.

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Just wanted to send you a big hug. I'm sorry, it can be so overwhelming. *hugs*

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