Narcotics, Anyone?
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free skin care · Wed Apr 25, 2007 10:19 am

Hi there,
No, I'm not selling drugs Laughing

I've been laid up for the past year...a very long story short, on March 28 I had a microdiscectomy (L4-L5 disc) to correct a severe herniation (they open up your back, cut away some bone and clean out protruding disk material...mine was pressing on the spinal cord causing spinal stenosis, electric shock pain and numbness). Up to the surgery and to-date, I've been taking ALOT of medication: Naproxen, Norflex, Oxycontin, Percocet, Ocycodone, Lyrica, Imovane. The pain prior to surgery was blinding - at times I just felt like dying - literally. I couldn't walk - I had to crawl..I still can't sit (I'm lying on the floor on my stomach while I key). Anyways, thank heavens for the EDS forum - I came (and still come) here every day, and while I don't post that much, and I don't know any of you personally, I still feel like I am among friends(no, I'm not creepy).

While I still have some swelling and discomfort I look forward to a complete recovery....I've cut my daily oxcontin dose in half which is great (very effective but frightening drug)...I suffer a great deal of nausea as I lower the dosage but I will be thrilled to be drug-free. Anyways, what I am curious about is whether any of you (or any of your loved ones) suffers(or has suffered) from either chronic pain and/or an injury that left you "laid up" for a crazy-making period of time. If anyone has anything they would feel comfortable sharing - that would be great! I promise not to PM you and I'm not trying to start a pity party, (well, maybe a bit of a pity party Embarassed

) - I think I might be feeling a tad sorry for myself..perhaps someone out there has a story that will help me to count my blessings (instead of counting the days that I'm been laid up!)
Pudoodles

free skin care · Wed Apr 25, 2007 10:30 am

I'm going to give you some "pity" cause you deserve it. I can't even imagine what you have and are going thru. The best I can do for you is give you lots of syber "Hugs" and hope that soon you will be up and around dancing, free of all drugs.

free skin care · Wed Apr 25, 2007 10:33 am

Definately sending hugs, I can't offer any stories or hope, other than, so sorry for what you've been thru, I do so hope that this works for you and you can get back to painfree living!!

free skin care · Wed Apr 25, 2007 10:42 am

Pudoodles, when I got diagnosed with Melanoma skin cancer on my ankle in June 2000 I had a bad time. In order to "cure" it, they had to cut away a huge area of skin around my ankle and replace it with a skin graft off of my butt cheek. I don't know which hurt worse! But the worst put was the recovery. In order for a skin graft to "take", you must remain absolutely still for a LONG time for the skin to attach to the muscle again. For me it was over 1 month! I could do nothing but sit in a chair, and believe me sitting on a butt that had skin removed hurt like Hell! But, the ankle was worse. Blood clots had to be manually pressed out from under the skin so that it could attach correctly. Thank God for the care that my wife Sandy gave me.

For a VERY athletic person like myself, sitting in a chair for 1 month straight without moving was absolute torture. And then when I finally did try to walk I fell over because my leg muscles had atrophied to the point where they couldn't hold my weight.

Bottom line is this. I know you can get through this recovery! Be tough and go for it. I competed in a bodybuilding show less than 4 months later! I never gave up and wouldn't let the setback slow me down. You can do it! I'm pulling for you to a complete and pain free recovery.

John

Wed Apr 25, 2007 10:42 am

Pudoodles - you have my sympathies. I had the same surgery done on L4-L5 and I think on L5-S1. I can to this day remember the sciatic pain before the surgery.... Mad

I was sort of in denial for a while there so decided to do physio to avoid surgery. In the end I ended up taking 9 months off work and it was my surgeon that finally said "enough is enough" and pretty much said that if he didn't operate there would be permanent nerve damage. Towards the end, just before surgery, I spent a month lying flat on my back on the floor, mostly sleeping because of heavy anti-inflams and muscle relaxants. The good news is that it took me roughly 10 days to recover after surgery to the extent that I only needed mild pain killers, which I certainly don't need anymore. Since then I have no back pain unless I don't do my exercises or have really long days at work.

So, hang in there and I hope your surgery was a total success that will leave you pain-free. I'm glad EDS is keeping you occupied Smile

ps. Put vit E oil on your scar. That was my surgeon's recommendation and my scar healed exceptionally well.

free skin care · Wed Apr 25, 2007 10:44 am

Pudoodles wrote:

I promise not to PM you and I'm not trying to start a pity party, (well, maybe a bit of a pity party Embarassed

) - I think I might be feeling a tad sorry for myself..perhaps someone out there has a story that will help me to count my blessings (instead of counting the days that I'm been laid up!)Pudoodles

Pudoodles,

I pinched a nerve in my back (have no idea how) and just being on Codeine for a week or so the worst I have is all the breakouts. I can't even think to how much pain you have been in. I have fibromyalgia and it can be painful but still not like what you are going through.

So, what's wrong with a teensy pity party where we can stray from pity to fun. Anyone know any good jokes? Razz

free skin care · Wed Apr 25, 2007 10:54 am

I was always an exercise fanatic, so when I suddenly fell ill, ending up paralysed for a while, then scarcely able to even walk halfway across a room for a few years, it hit me really hard.

I went through the "I want to die" stage, then the "why me?" stage, but I did come through it okay, if that's any comfort.

What helped me was finding out that there were others with the same disease as me, and that, although some of them died or were incapacitated for life, many more were able to live relatively normal lives. That gave me hope, after losing all sight of it. Is there a support group of some kind for people who've had to undergo the same op as yourself? They will certainly understand how you are feeling and may be able to give you some tips on how to cope and how to help yourself recover.

Throughout the weeks I was in hospital, I embarked on a French Language A'Level Course, read loads of books and watched my favourite TV shows. So try and keep busy by doing things you can enjoy whilst incapacitated. This helps to take your mind off the pain and stops you getting depressed about what might or might not happen.

It sounds silly, but comedy shows were a lifesaver. Unfortunately, though, it really hurt to laugh! Laughing

It seemed to me that feeling down just led to a downwards spiral, but trying to remain upbeat made me feel physically better too. (Don't worry, though, you ARE allowed to feel a bit sorry for yourself. Nowt wrong with that, just don't let it go too far.)

Once I was able to move more freely, I decided to do something I'd never been able to do previously - learn to swim. It was the only form of exercise I stood the slightest chance of doing at the time. I was absolutely determined to get over my fear of swimming, and that's exactly what I did.

I'm not sure whether swimming will be an option for you. I do hope so - even if there are only certain strokes, or perhaps modified versions that you can do. It really loosens your joints, gets you moving again, helps to straighten out your body - and feels blummin' great!

Otherwise, I'm sure you'll be given physiotherapy, so make sure they teach you exercises you can perform at home. This will give you a sense of being able to do something for yourself to help you recover, and allow you to set targets - something to aim for.

But you know the thing that helped me most? Something incredibly simple, and something that I've used to get me through bad times ever since.

I came to realise that nothing lasts forever. Okay, that means good things - but it ALSO means BAD things. Pain is NOT forever. You WILL get through it. Little by little, you'll gradually see the (I hate to use such a cliché, but it's so appropriate) light at the end of the tunnel. That light is your target. All you have to do is to hold on in there until you help yourself to reach it.

I do hope I don't sound like a really awful self-help manual (and I've a horrible feeling that I do!)

Anyway, if I can help in any way - with motivation, with ideas, tips, even just provide a shoulder to cry on or someone to rant to who understands, just let me know. Feel free to PM me if ever you feel the need.

free skin care · Wed Apr 25, 2007 11:56 am

Oh, Pudoodles, my heart goes out to you! I cannot imagine what it must be like to go through such pain. I wish you a swift recovery.

free skin care · Wed Apr 25, 2007 12:04 pm

THUD.
I am so touched! Ya'll made me cry! I could just hug all of you for hours! I don't even know what to say! Thank you, thank you, thank you, from the bottom of my heart! Really and truly, I could just hug the hell out of each and every one of you!! I hope you don't think I'm a cornball for saying this but thank you for sharing. I really do wish I could give ya'll a squeeze! You made my day, you really did.
pudoodles

free skin care · Wed Apr 25, 2007 1:16 pm

Pudoodles
I am sending you a big hug & good wishes. You will get through this, how can you not with a world full of good vibes being sent to you from the gorgeous,lovey EDS members.
Take good care of yourself & if you want to rant on a bad day or a good day you can pm me anytime. I can take it.

lori

free skin care · Wed Apr 25, 2007 2:38 pm

Pudoodles, whatever you do don't give up. I herniated L-5 really bad, did physio, finally gave up and had surgery. Don't do what I did. I felt so good that I wound up reherniating L-5 and having to have surgery within six weeks of the 1st one. Second one took a very long time to heal and alot of physical therapy so that I didn't drag my right foot. Good news, I walk normally. I do have pain when I overdo and/or don't do my exercises. More good news, all I take for pain now, knock on wood, is advil and not much of that.

Now for you, I would be willing to bet that a combination of the pain meds and boredom are what is getting you down. The pain meds made me extremely depressed. I would imagine that you probably have some nerve damage. Nerve damage takes a good while to heal. Be patient, real patient. This time 4 years ago I would never have believed I would be telling anyone this. I didn't think it would ever get better, but it did get a whole lot better. Hang in there.

free skin care · Wed Apr 25, 2007 3:36 pm

Hi Pudoodles! wave

I am also sending hugs. I just said a prayer for you asking for relief of your pain and will continue to do so. I can't even imagine going through the pain you describe. You must be one strong person so I have faith you will be able to overcome all of this. Please keep us posted!

-Cheri

free skin care · Wed Apr 25, 2007 3:38 pm

Pudoodles -
Although I haven't had surgery, I really know how you feel. I have pretty severe back problems. Make sure you're comfortable with your Physical Therapist - that's going to be an important relationship as you recover. Best wishes to you!

free skin care · Wed Apr 25, 2007 3:54 pm

I'm sorry to hear of your troubles Pudoodles and I'm glad our little community here at EDS is offering you some support and a bit of distraction from the daily blues. We've all been there before. Some worse off than others, but I'm sure we can all understand feeling down in the dumps. Just try to keep your spirits up and focus on the good things. Think of this time as an extended vacation from work, a bit of "me time", a time to read all the books you've been dying to read, or learn a new hobby, a new language, a new skill, or maybe do a little soul searching and discover something new about yourself. I believe that any challenge we face in life is a time to learn a lesson - something we may not have wanted to accept before, or have been putting off acknowledging or understanding, or a time for a whole new enlightenment and direction. Focus on the positives instead of the negatives and be sure to surround yourself with people you love and who love you. Don't be afraid to ask for help and support when you need it. Know that all of us here wish you a speedy recovery and that we're all sending you love and good thoughts. Get well soon. Smile

free skin care · Wed Apr 25, 2007 4:21 pm

Awwww sweetie, someday soon this will all be behind you...

A good friend of mine went through the same thing. He stayed on his meds for way too long after his surgery. To be honest, he didn't want to do without them. It was a long road back for him. The good news is, although it was rough going for awhile, he's fine now. No drugs and no pain!

You've been through quite an ordeal. As far as I'm concerned, on days that you feel like ranting, whining, pouting - WHATEVER - you feel free... Hell, sometimes it's JUST what the doctor ordered!!! Wink

free skin care · Wed Apr 25, 2007 4:40 pm

you will feel better Pray

free skin care · Wed Apr 25, 2007 5:02 pm

Nothing more to add just sending hugs and prayers.

free skin care · Wed Apr 25, 2007 5:15 pm

Puds ... more hugs and prayers from me. I know pain well, and know that sometimes it's a pit, isn't it??? Hard to climb out.

This WILL be behind you some day ... time is the great comfort.

Blessings -
Ruth/4sons

free skin care · Wed Apr 25, 2007 8:16 pm

Pudoodles- I wish you the best and hope that you fully recover! It's so hard to go through surgery on your spine. First of all, be thankful that the medical community has made many advances on spinal surgeries as to minimize damage and increase successful results.

15 years ago my mom herniated a disc (between L5 & L6) and never recovered and in fact has progressively gotten worse. I will try to make this brief... Anyway, she spends a lot of time in bed as a result. She's anatomically different in terms of where her nerves are located so when a piece of disc "broke off"(during surgery or after- the docs weren't sure) became lodged in between her anatomically different nerves, she became worse instead of better after surgery. MRIs never indicated anything that would be causing her severe pain and loss of motor function in her leg so they ended up performing exploratory surgery and that's when they found it. It had already caused too much damage so surgery only helped a little. My mom is a chronic pain patient and has to be on too many meds. She also has idiopathic poly neuropathy which is itself quite painful. This was diagnosed about a year following her first surgery. She ALSO has scar tissue growing around her spinal cord (she over-produces scar tissue) slowly closing it off. She does alright considering but still requires a cane to walk. She's tried two spinal stimulators but they both failed. A couple of months ago she was diagnosed with stinosis and has two more bulging discs. She has also gained 70 lbs over the last 15 years as a result of medications and lack of activity because she has to be in bed so much otherwise the pain soars out of control. Well, that's the short of it (written quite bluntly- sorry). Really, despite her chronic pain and the fact that she has lost most of her life as she knew it (she was always a very active person) she still maintains a good attitude. Honestly, I don't know how she does it, bless her heart!

I hope I didn't depress you with my mom's story! Please promise me that you will take care of your body and never again lift anything over at least 20 lbs? (Actually, not lifting over 10lbs would be more ideal.) Also, make sure you eat well and take good supplements so that you heal the best you can.

And if you need to PM me with any questions or anything, please do. Smile

Take care sweetie!

free skin care · Thu Apr 26, 2007 6:06 am

Pudoodles wrote:

THUD.
I am so touched! Ya'll made me cry! I could just hug all of you for hours! I don't even know what to say! Thank you, thank you, thank you, from the bottom of my heart! Really and truly, I could just hug the hell out of each and every one of you!! I hope you don't think I'm a cornball for saying this but thank you for sharing. I really do wish I could give ya'll a squeeze! You made my day, you really did.
pudoodles

Hug away just remember to steer clear of Johns butt cheek! Anxious

free skin care · Thu Apr 26, 2007 11:44 am

WOW - thanks, everyone - I just read through all of these posts again and WOW! I'm really so touched. Thank you for the hugs, for sharing your experiences and for sharing the experiences of your loved ones...I'm not a gushy person but man, I think it is so wonderful that you guys shared your "stuff" with me. It might seem silly to you guys but I've felt so "in the hole" lately..and to think that all I had to do was reach out! I can't think of a word that is good enough to describe how fantastic I think ya'll are! I really DO wish I could give all of you a hug (and awh, what the heck, I'd hug John's bum too!) Laughing

pudoodles

free skin care · Thu Apr 26, 2007 1:09 pm

Pudoodles, do you mind me asking how old you are? (I can't remember if you've mentioned it or not in other posts.) Was there a reason why you ended up with a herniated disc? Do you have a bad back in general or do you use your back every day (so that you herniation could have been the result of over-stressing your vertebrae)?

And Mabsy- what about you? Was your surgery the result of genetics or over activity?

I actually have a bad back (my mom and her siblings all have had back surgeries and it looks like I inherited the same bad back). I've injured it a few times and have had a lot of physical therapy. I have to be really careful! A couple of different docs and physical therapists tell me I have "hinges" between L3 and L4 and then again between T1 and T2 meaning that when I bend over I am really flexible at these points and really stiff elsewhere so these points experience a lot of stress. It's so strange- when I bend over and touch my toes you can literally see where I "hinge".

free skin care · Thu Apr 26, 2007 1:11 pm

amnis wrote:

15 years ago my mom herniated a disc (between L5 & L6) and never recovered and in fact has progressively gotten worse.

Correction: I meant L4 & L5!

free skin care · Thu Apr 26, 2007 7:40 pm

You're allowed to have a pity party sometimes! I hope you are feeling great in no time!

free skin care · Thu Apr 26, 2007 8:11 pm

I too, suffer daily,nightly with pain,it sucks.
I put ice packs on my back and wear a back brace. I have tried it all.Fibromyalgia also.
Thank you for bringing the subject out,and I love our community here. Some really wonderful people here,and probably very beautiful on the outside also.
Take Care,

You are welcome to pm me.
Linda

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