Hi everyone, I'm new to the group and I've been reading a lot of your q&a's. I was DX with DDD several years ago, I have a PM Dr. I am taking Hydro 10/320 4 x's daily, OxyContin 10 mgs. 2 x's daily and Baclofen 20 mgs 4 x's a day. As a result of the DDD I have severe nerve damage. My legs go numb and shake uncontrolbly at times. Making it very difficult to walk. It's also very embaressing at times. I've noticed that when it get's later in the day it seems to get worse. Any suggestios would be very helpful. Sorry such a long story, and typo's. Thanks
Hello B and welcome to our group----please feel free to post all you want--as for length---well----you have read our posts ---some are longer---some shorter--and typos---well who cares as long as we can read it.
These posts are just chock full of great things you can do for your pain (and refresh your spirit) so check for something here and the trick is to Actually Do-Try the Techniques. I will have more to share later on and group members will say hi and be here for you. Again Wecome----omhome
Well BareFootBabe310, WELCOME,
I have the same DX (diagnosis), DDD/DJD. I have had it for years. Yes, it is rough and it gets 'old' BUT you are not alone. I have taken the same medication you have but found my system created problems with some of the narcotics. I now take muscle relaxers for some of the pain and will be getting a 'new evaluation' from a new pain management team. I have had all the shots/nerve blocks and surgeries. Some of it helped and I AM WALKING again after so many years in a wheelchair. I still have 'some' pain but nothing like it was before. Activity helps. (it keeps your brain busy) Some of the medications you take sound pretty heavy.
My last injections of steroid shots to my hip and treatment to the piriformis muscle which I have had for years, was successful with a Botox injection to the muscle. My pain has subsided but with activity increases. I am used to this. I am going to a new pain management team for possible shots to my upper back and maybe some more treatment to my hip.
That is my experience but be patient. There is treatment out there. There are also friends here that can help.
I KNOW it is HELL 'getting old' , so just tell your mind not to do it...it is not all it is cracked up to be. (smile)
Just stay strong and focused. Keeping the mind strong will help 'distract' the pain. If that is all we can do, it is something?? Be patient with what is happening to your body. It could be a reaction to the drugs or just muscle does not like what is going on.
I will keep you informed of my progress as we hope you will do the same.
Thanks so much for your reply. It does help to exercise, (walk) just can't do too much at one time. Pain gets really bad when I stand too long. Legs go numb, I'm sure you know what I mean. Good luck with new team.
Hi again and welcome to the cp couch :)
I have a different problem with my body, mostly my back, but it does affect my ability to stand and walk. So I can relate to many of your health concerns needing to take pain meds to cope with chronic pain. And I'm trying to learn how to enjoy my life with the body I have!
Welcome, welcome, Sue
Wow, I only take Baclofen at night with my Gabapentin and it helps me sleep. Apparently the combination (I hear from my doctor) will put you to sleep (at least in my case) but I never thought of increasing my Baclofen during the daytime. I never thought it did much (that I noticed) but maybe I will try increasing it for muscle spasms. Thanks for the information. Appreciate the incite.
Oh yes, I understand. I was told (at one time) to increase my physical therapy, which I have been to 12 times already with no positive results). I am not sure what helped with all the shots and nerve blocks I have had over the years but something worked. I think the Gabapentin helped. I stopped the Gabapentin at one point (with all the pills I was taking) and went into withdrawal. Back on Gabapentin but only twice a day. (doctor says 3times a day) but I don't think I need that much. (just too many drugs to figure out what works and what doesn't). Yes I understand what you mean. I think for me, pushing the envelope a little at a time helped with the walking. A LOT OF REST for the muscles and then pushing the envelope a little more each time. Scary but I could not understand why I could not walk and I have had the tests done with no definitive answer so I pushed myself. Just determination and sweat for me. Takes a lot to do that, believe me. Too scared I would never be able to use my legs again.
Just a little at a time. Keep a record and don;t push yourself. Your body does not like rapid change. Set a monthly goal. Do the best you can and stay strong. Keep the mind busy even though the tears flow. I know I had many a day when I cried because I could not walk. Tired of feeling sorry for myself and shear determination kept me going. My music helped work through the pain. At one point I got myself so drugged up to just not feel the pain and then the drugs took hold of my body and made me sicker. When I looked in the mirror one day and saw what the drug were doing, it scared the hell out of me! Doctors did not understand what was causing the pain issues. More steroid injections and no answers? More pain and no drugs. The rest was done out of just fear. It takes A LOT to reach that level. Amazing to see what fear can do for you.
I don't know how long this 'good streak' will last or what to expect. Just know that today is here and I can use that as a building block to focus on when things get bad. Still looking for a pain management team (that won't keep changing my doctor each time) and that truly understand the pain issues (without the drugs). So, more shots, shear sweat and determination to just get through the next day.
The walking has its good days and bad but it is not as bad as it used to be. A lot less pain but keeping those muscles active helps now more than ever. I can't afford to go backwards anymore so that is what keeps me going. Wish I could offer a more medically sound answer. Maybe the medical answer is here and I just don't know it.
Looking forward to actually putting my feet into the water on the beach, something I have not done in years. Tired of looking at the water I love and not being able to touch it. Now that is going to be one hell of an exercise for me, mentally and physically but I miss the water so much. ( I was a former sailor and love the water). Can't wait for the summer. At least it is a goal to set.
I read your post and have to tell you that I too cannot walk or stand so i force my self to do so...i do small tasks, then rest, then on to a different task and then rest. I have bunnies, ducks, birds and squirrels along with kittens to feed every day and as i and they love it and depend on me that is my chore for the day. i go to the local walmart every day in the winter and take an empty cart and walk around the store for a 30 or 60 minute session, sometimes throwing something in the cart, but most times not. for some reason, walmart carts push me straight up in a normal position and i always feel better after walking...i am on no medication except anacin aspirin and i prefer my life that way. i was told by my surgeon 3 years ago that my prognosis is very grim and i should brace myself for a total disabled life in a wheelchair or hospital bed....i told him not to put any money on that bet cause he will lose and i have never gone back or had any other surgeries and every day up on my feet is another day of proving that medical doctors don't know everything.....
see you soon sue in the boards...take care and blessings to you
Have you ever tried water arobics, or water exersize? They say it really helps by taking the weight off your legs and all. I've never tried it but I've heard good things about it. You said you love the water is what made me think of it. They offer it at the YMCA here every few months.
Thank you Sue. Until I started seeing my PMP I had no idea why my legs shake so bad. He did some testing and said it showed that I had had a stroke or severe nerve damage from my DDD. Needless to say I haven't had a stroke. Good luck with your journey.
I have been to rehab medicine over 12 times and each time (after about two weeks) they freak out because I got back to pain issue, then send me back to my doctor who cannot explain the symptoms. I also used my neighbors pool for therapy but to no avail. That was then. Now just doing what I can at a snails pace but at least this snail is still moving.
i go a lot faster when i slow down consciously----going slower gives us a chance to notice that quiet space-place in-between our thoughts-----yes madman---slow is so much better really-----please please don't leave a trail of Slime! om
Sorry MadMan it was just a thought. I really figured you had tried everything.
You and om make me feel so welcome here. Thanks again. Let me know if the Baclofen helps taking it more often. Even though it is prescribed 4x's a day I have just started taking it that way. I was like you about it helping me sleep. Seems to be helping though. Let me know.
I have found feeling more pain at night is the worse for me. You body calms down from the days event and then it reacts to what you have been doing that day. Yes, I have tried everything including being evaluated for a spinal cord stimulator BUT my doctor changed her mind and said I 'was not a candidate'. (didn't want it anyway).
Just getting through each day is the real challenge. Yes, the nights are annoying but the medication helps. Then I start the whole process all over again. At least it keeps me mentally fit (so to speak) but you don't need a second opinion on that from me. I am just crazy!
After going through ALL the conventional treatments for my pain issues, I am constantly researching new doctors who are willing to treat with a new education on pain and nerve damage. Due to the scar tissue in my lower back from the multiple surgeries I have had, not much can be done there but the pain is bearable. Not like it was many years ago. I still trust my surgeon but his hospital has gone through a change of management and the way they treat is to get an appointment, wait a month for the treatments and then get you into a surgical center to just give you shots and then bill Medicare for the whole treatment has disillusioned me. Shame, but it happens.
My family doctor recommends that I get a bone density test in the event that the medications or treatments might have caused any problems so that is a good focus to learn more about. Any feedback on bone density? Curious?
HI MadMan, I have had several bone density scans. There's nothing to it, it checks to see if you have any bone loss due to Osteoporosis or ant other problems. I am going to have another one next month. My PCP recomends one each year.
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