My family does not understand my medial problems

[shylo1]

I really don't know if this question belongs in this section but here goes. I'm 49 yrs old and I've had neck & back pain for 18 yrs. I had surgery done for a bulging disk C5-6 in 2000 which failed. I have severe pain right side neck, shoulder, arm, and hand. My diagnosis is failed fusion C5-6. I have degenerative disk disease C3-C4, C4-C5,C6-C7, central herniation of the C3-C4 which is touching the central spinal cord, severe tendinosis of the supraspinatus tendon, tear of the posterior-superior labrum, reactive fluid in the subacromial-subdeltoid bursa, neuropathy at the left wrist which are consistent with moderate degree of carpal tunnel syndrome affecting the sensory branch nerve. In the am I can hardly walk my feet feel like clubs. I'm  not sure what is causing that. Anyways I could go on forever with the medical problems I have but I won't bore you any more. I take 2 different pain meds, muscle relaxer and trazodone at bedtime, and neurontin. When I was younger I trained horses up until I was 38 yrs. old and I've love to garden all my life. I've always been very active up until the last year or so.  The pain just wears you out sometimes. If I didn't take pain medication I would be sitting on the couch watching T.V. everyday.  Now that would kill me. I don't see my family like i use to. I see my neighbors & friends alot more than I see family. I have the kind of family especially my father that never asks me how I'm doing. You know about the medical part of my life.  So just recently my family thinks I'm taking street drugs or something else is going on with me. Because they say I look so tired  all the time.  Hello no kidding I look tried I'm in alot of pain and its all the time which of coarse wears you out. They don't ask how bad my injuries are or anything else about my medical problems.  No they just think I'm doing drugs for fun. For god sakes I'm 49 yrs old. I asked to borrow money and they want to know were all the money we make goes. I'm disable and my husband is the only one that works. They have no idea how much prescriptions, doctors, MRI's, etc. cost.  I asked my mother why do I run around looking all high on drugs?  She tells me no nothing like that I just look tired.  She says well sometimes I'm hyper and sometimes I'm quiet.  I tried to explain that when I'm not in alot of pain I can do more things and of coarse when I in pain I sit still.  So I don't know if anybody else has this problem that your family thinks your on drugs. My friends and neighbors have no idea what my family talking about.  My friends know about and ask how I'm doing all the time. But my family pretends there's nothing wrong with me and they never ask about my medical problems. They make me feel like I'm just a loser and of coarse a drug addict.  thanks for listening.

[needhelpsoon1]

You aren't a loser and I have a similar situation!   I too feel like everyone just thinks I'm now addicted to my pills!  If I wasn't in pain I wouldn't take them.  They make me tired all the time and I was a 5-10 mile a day power walker and all of a sudden I could hardly walk to my mail box.  I just keep searching for answers and no two Dr's seem to  agree on anything.  The burning pain in my neck, shoulders and arms is crazy (and making me crazy).  I have failed fusion also from 2004 and now they want me to hop back on the table for more fusion.  I'm worse now than when I started.

Anyway I just wanted to say hang in there, you are not alone!  That's what I'm getting from everyone also that I look so tired, well I can't sleep when the pain is running up and down both arms and across my shoulder blades.  That sort of rules out sleeping on either shoulder or my back and I can't sleep on my stomach because my original neck fusion won't let me turn my head to either side enough to sleep!

By the way have you tried Lyrica?  I believe it is the new neurontin, I think it works some...

Jody

I pray we both get answers soon!  I pray everyone gets an answer and can live a pain free life or at least a tolerable level.

[Katie1982]

I know exactly how that feels!!  I have been called a drug addict so many times, I even put my self through detox just to see if I was as crazy as everyone else thought I was!  Just to find myself in so much pain, the doctors there told me I was not a threat to myself or anyone else, and that there are things wrong with me that only physical therapy, surgery and pain meds could make better for now.   In my experience, what we live with is chronic and non life threatening, so people get tired of hearing about it after a while.  Its not going to kill us, and its not going to go away.  So why ask?  Im done with trying to explain myself to anyone.  It is your body, and only you know how much it hurts.  People like us, we have good days and bad days, and being on pain meds all of the time can lead to depression.  I would like to think that these other people, they do care about us, but they are helpless, and it is just easier for them to look away, and justify themselves in doing so by calling us names, then to actually deal with us.  Does that make sense?  

I 've learned that the people who matter, care, and the ones that don't care, don't matter.  I put myself through hell detoxing just to prove a point!  Why!!!  If you find that someone is asking you all sorts of questions like why you sleep at wierd times, or why you look like hell, then simply answer the questions, but dont sound desperate, like you need to justify your self.  If it seems the situation is getting tense, walk away.  I don't volunteer any info anymore, I only answer when Im asked.  If they don'y understand the money situation, show them what your co-pays add up to each month.  Thats what I did.  No one understood why I was borrowing money,"because you have health ins" and then I added it up and put it on the fridge:
FOR THE MONTH
surgeon:30$
Physical Therapy: 30$ X 3 Times/week
Meds: 10$ copay for each medication = 40$
Pain managenent specialist = 30$
Testing = 150$
610$
Any other questions?

You are not alone, I know what you are going through.  Im 25, so naturally, everyone thinks its a drug thing.   "Your too young to have all these problems" is what I hear all day.  I'm just taking care of myself, setting my goal of being able to ride horses again, and right now, going to work everyday is my accomplishment.  Check your area for support groups, they can help you learn how to work with your family, and some of them are free.
I wish you the best of luck.

[here4theinfo]

Hi, I too am in the "too young catagory". I require medications allmost 24/7, and then somedays, they just make me feel comfortable while I sit on a heating pad all day. I too have had times where I do not take my medicines, thinking thats gonna help me become "normal" again. I was very active when I wasnt in pain, and then 3 years ago it just started and has become worse and worse. I feel like there is no end in sight and I will never return to my normal self again. I have 3 kids and have to be active for them..Its like a catch 22. Anyways, my point is, until things can get fixed, chronic pain is obviously something that will be a part of my life, I have to accept it, and keep searching for the right doctor to fix me...LOL.. Good luck, if your family cant accept it, just know that you have too..

[francis123]

i'm on the same road, and is so sad beside i don't know what i have i have to dealwhit my family to understend what i fel and for what i pass everyday beside my phisical simptoms i feel so alone just for my sons i don't gibe up yet, but i feel so bad and doctors help me to feel worse they look like they don't rrealy want to do for me i'm so tired and scare whit all this and i need to play like i don't have anithing infront of my family that i prefer to stay away from them, is so easy to judge someone when they are not passing for this, my only friends is God i know i can count whit he'm no matter what and holy mary  and my mother who already pass away and 2004 they make feel better when i feel  alone i talk whit them and help me a lot , thank you for everithing and have faith and God, God bless you

[MRImark]

I have a girlfriend that thinks i'm making up all my medical problems so I don't have to work. I still work through my pain. The meds take the edge off........but they don't fix the problem. I guess you have to walk in my shoes to know how i feel

[PEPSIGIRL2U]

Me too I am 37  and have had back and neck probs for years and it is effecting every part of my life I was married for almost 20 yrs and my hubby complained all the time about my complaining but I was in constant pain