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Old 12-26-2007, 11:36 PM   #1
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Unhappy Degenerative disk disorder an I'm only 27. Is my life over??????

You can read my previous post to learn about my back pain, but I finally decided to go see a specialist. Since I wanted to keep my options open, I booked a chiropractor and a neurosurgery spine specialist. They are in total agreement, along with the general practitioner who prescribes my meds (when I hadn't even told him the opinion yet) that I more than likely have degenerative disk disorder. I do not yet have an MRI, but I go back to the neuro on Friday and will set one up then. I can tell they are just basically waiting for it to confirm what they think they already know.

These people are all independent of each other, and all did an extensive physical exam. (well, the GP's was less involved) I definitely have the problem with L 4-5 that I've known about for 4 years now, along with the nerve pain. "Living with it" as I have been had left me with possible permanent neuropathy, some muscle weakness, especially in the left buttock, groin, foot, and toes, and a physical dependence on Tramadol, which doesn't even work anymore. When I first had symptoms, I had just had a baby and I was 23, so I think everyone just assumed that I had injured it somehow and PT and time would make things better. It didn't. Then they started throwing the Ultram at me. They would always say "At your age, you can't get started on the strong stuff now...." Well, I had to take so much ultram so often that now it doesn't even do anything anymore. I tried to not take it one day last week, and started feeling awful by 2pm, so now I'm having to taper.

The docs say I likely also have a problem with one of the disks in the upperback/lowneck area (not sure which one. L 4-5 is the one we've really been concentrating on) that causes my shoulder and arm pain, as well as the burning sensation and localized muscle twitching that I get just beside my shoulder blade. That was a surprise to me. I had thought they were unrelated.

I have two beautiful preschool aged children. I have a husband, who, though he's a wonderful man, has never dealt with chronic pain or any medical issues and subscribes to the whole "mind over matter" philosophy. He asked me tonight "How do we fix it? So you don't have to go to doctors twice a week or stay on meds forever?" He just wants to fix it and forget it. I just turned 27, and prior to this I was in great shape, slender (I still am) I ran track, I high dived, I water skied, and I never had aches and pains. Now my back is always aching. 100% of the time. When I get up in the morning it's because my back hurts and I can no longer lie there. By 7 pm after a day of taking care of kids, doing laundry, other household stuff, and cooking, I am usually really hurting. Anywhere from an extremely uncomfortable ache in at least a couple of areas, to crippling sciatica and burning foot pain.

I am so worried about this MRI, because everyone I have ever known with this problem just continued to deteriorate over time. One of my Uncles has had 3 surgeries and has to take oxycodone all day just to get through the day. And he often still has pain! One of my Aunts was completely bedridden by 50 and died at 61. (She also had Rheumatoid arthritis and did herself a great disservice by overdoing it on the steroids for many years. She couldn't heal from anything.)

My Chiropractor is very positive. She says her job is to teach me how to protect the area and how to get through the day without pain, and she thinks she can help me. The neuro is super nice (and young. and cute!) and says "We'll see what we have to do to fix you. You shouldn't have to deal with this at your age." The GP, who has also always been super nice, kind of shook his head and said "at your age....." and the tone and demeanor didn't say hopeful, it said pity. He also told me that I should be proactive in stopping any more damage in hopes that I could get over it, but told me that realistically, most patients with more than one non-accident related deg. disk continue to have disk problems for the rest of their lives and become chronic patients.

My hubby just can't seem to grasp the idea of anyone having a chronic condition. He said "So what do we do if that's what it is? There has to be something. How do they stop it? You can't be saying you just keep going to the doctor all the time and getting shots and pills?" and he was quite incredulous about the whole thing.

Psychologically I'm feeling pretty beaten right now. I've been treated so badly by doctors who didn't believe me and thought I was a junkie (I refuse to use the phrase "drug seeker" because, well, I was seeking drugs. My freakin' back hurt badly, and I wanted some stinking drugs!!!") that I began to doubt the severity, even the legitimacy of my pain. I have been in doctors offices before rehearsing what I could say and do to make sure they gave me strong meds, feeling like I was somehow doing something wrong. It was almost like I became what they thought of me in my own mind. Now I see doctors who believe me, but I'm hearing bad news. My hubby has been talking for months about finding some treatment that would work so I could stop taking all these meds. I think he might lose his sanity if I became a chronic pain patient.

What can real people tell me realistically? What kind of quality of life can I expect? I know I won't know for sure until I get the MRI done, but assuming the doctors are right, what is going to happen to me? Is my body going to continue to slowly fall apart like it has started doing? Can the process be halted? Is there a possibility I will ever be pain-free? And why do I feel so weak psychologically? Like a whiny kid who scraped a knee and can't "tough it out." My hubby, though he would never admit it, I get the impression that deep down he thinks I'm being a baby. I feel like I'm being a baby. I want to enjoy life and be able to roughhouse with my children. As it is, I can't even give them a bath without causing myself great distress for the rest of the night. The last time I played a rough outside game with them, I hurt for 3 days. I used to never have pain! Never. Now I can't remember what my back feels like when it is completely ache-free. I just need some support right now.
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Last edited by XRoseTylerX; 12-26-2007 at 11:40 PM.

 
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Old 12-27-2007, 05:24 AM   #2
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Re: Degenerative disk disorder an I'm only 27. Is my life over??????

Wow, Rose, I'm so sorry you're going through all this. But you've come to the right place to get answers and support. One thing you'll find here is that we try to stay positive, but we're also always honest. We aren't going to just say "don't worry, you'll be fine." We won't sugar coat it.

You might always have to deal with this, but your life isn't over. You're going to have to be very careful, but there are lots of people out there who have dealt with these same problems and are enjoying life and family to the fullest. I encourage you to read the thread at the very top about less stress on your back around the house. The more you preserve your back throughout the day, the less pain you'll have. I know it's hard with little ones, but as you figure out ways to do your regular activities differently, it will help. You can even involve your kids in age appropriate ways. For example, let them pick things up off the floor for you, even if they just pile them on the sofa. At least you won't have to bend all the way over. Every little thing you can do to put less stress on your back adds up during the day.

It sounds like you have some good doctors taking care of you. I would precaution you about the chiropractor, though. If you have something serious going on, and it sounds like you do, a manipulation COULD do permanent damage. Chiros are not doctors. Some are certainly better than others, but I would make sure the neuro clears you before letting the chiro manipulate you. Are you scheduled yet for the MRI? You'll know more after you get that done.

Don't feel guilty about seeking drugs. Like you said, you're not "seeking drugs." You're seeking appropriate and legal drugs for a valid reason under the supervison of your doctor. If you need them, you need them!

Can your husband go to an appt with you, especially the appt when your doctor will discuss the results of the MRI with you? Some people here have found that to be a good way for their spouse to finally "get it." If he's willing, let him ask questions, too, and make sure you ask basic questions even if you already know the answers so your husband can hear it from the doctor himself.

I wish you the best. I hope you get some answers and a plan. Don't lose hope! This may be something you have to deal with long term, but your life definitely isn't over! You may have to modify a bit, but you'll be able to enjoy your family and participate in lots of things. Maybe not roller coasters, but lots of other things. Keep in touch and let us know what the MRI says.

Blessings,
Emily

 
Old 12-27-2007, 05:35 AM   #3
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Re: Degenerative disk disorder an I'm only 27. Is my life over??????

Wow, ok one thing at a time. Get the test results back and see where the discs are or are not damaged. Then work on getting what treatment best suits the area. I had a L4-5laminectomy at age 33, but had problems since I was 17 in that area. This year I had ACDF on C5-6. I have degenerative disc disease. It runs in my family. It is important to get the pain under control first and try to not aggravate the inflamed areas. It sounds like the nerves are being very irritated and there are medicines to help with that (I take Lyrica for that part of it.) Your husband is probably afraid of you becoming an invalid, this is not to be expected so young, however it is important to seek out good care to prolong quality of life. I was an extremely athletic and active person until after my child's birth, it seemed to set off a hormonal storm that led to thyroid disease and other strange things in my body. I would suggest if you are not already, to start taking Caltrate+D to help keep your bones strong. There are many exercises you can do to help keep your core body strength which helps to support the back/spine. I know it is really overwhelming, but hang in there and continue to seek treatment. Just a suggestion, but I personally would not get chiropractic treatment with DDD. The spine is more fragile within the disc spaces. Check out your options and do what you feel is best for you, not what is convenient for others in your life. This does not improve over age it deteriorates so proactive now is better for later!
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Old 12-27-2007, 07:39 AM   #4
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Re: Degenerative disk disorder an I'm only 27. Is my life over??????

Hi

Sorry to hear your story! I am only 26 and have just had to have back surgery for a herniated disc which gave me trouble for years. It can so very depressing I know.

What does the chiropractor say? Are there any alignment issues? If you are having back pain and leg pain, I would say something is not quite aligned in your body.

I used to get all sorts of back pains, leg pains, shoulder pain, everything - until I saw a very good physio who told me my pelvis was unstable. It had gone on for so long that it caused the discs to wear away. Back pain can really be as simple as that! I had a weak core and now I do core exercises upwards of five times a day!

I had my surgery six weeks ago and although I still get flashes of pain, it is much better. I don't get back pain because I keep my core strong and anytime my pelvis is out I correct it.

I don't think the answer for you is pain meds. Try to see a really good sports physio who will look at the bigger picture. Remember you have to stay in that body for a long time, so it's time to get it back in alignment and then keep it strong.

To me the discs deteriorated could be the symptom of other biomechanical issues e.g. weak core, twisted pelvis, have you checked your foot mechanics?

If do have a disc issue, then by all means sort it out, but maybe a lifestyle change could be in order. What about postural awareness? So many people complain of back pain and then you see them bending over, twisting and all sorts, slouching in chairs, and it's no wonder.

Hope you get some answers. My advice would be to see a very good physiotherapist who knows what they are talking about and isn't into quick fixes (like a lot of chiropractors are!)

 
Old 12-27-2007, 10:35 AM   #5
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Re: Degenerative disk disorder an I'm only 27. Is my life over??????

Thank you so much for your responses. I'm going to try to answer all the questions... yes, I am trying to schedule an MRI. I have to get a pre-authorization AND a second opinion from a PCP and a specialist before insurance will cover it. My insurance is normally pretty good, but this is a pain in the butt. The neuro and the GP are on board, so now I'm waiting to be contacted by the insurance company that they have agreed to cover it.

The chiropractor I have been seeing has worked closely with my particularl doctor on a number of occasions. She will defer to the neuro, on medical, structural, or surgical issues. So far she has been more like a physical therapist than a traditional chiro. Last night was the first time she did any manipulation, and it wasn't even on my spine, it was on a store stiff shoulder. Jeff, she is very good about the exercise and stuff. She identifies problems in office, then gives me things to do and watches the reactions then assigns me "homework". She is incredibly good at locating my pain, and she has been incredibly gentle with my spine thus far. She teaches me how to do daily activities in such a way that they won't re-aggravate. So far I've learned to vacuum with both hands and not leaning, and to kneel instead of bending when bathing kids, and just not to reach at all if I can help it. (my most serious irritation occurs when I do anything that causes my low back to curve inwards more.) She also says the groin, buttock, and pelvic muscles on the left side are weakened, probably due to nerve compression, and that it becomes a vicious cycle if you don't force those muscles back into shape to protect your back. She also mentioned that my pregnancies ripped apart the lining that holds the two sets of your ab muscles down the middle together. (It doesn't ever go back together. There is a term for it, but I can't remember it. It sucks bad because I always had been admired for my perfect stomach before.) So I have a week core/midsection which is contributing by and being worsened by the back stuff. That is the major focus of the therapy with the chiro.

I have a hereditary factor. My dad's 3 sisters and father have DDD and have had back issues all their lives. My Dad has gotten to a the point where after work he's struggling to get up out of a chair and walk across the room while holding his back, but he refuses to go to the doctor so we don't know anything. My mom's Dad (who also has osteoporosis) and my mom (who has great, heavy, dense bones) also have DD's in their lower neck which causes the exact same shoulder/arm issues I have. Another thing I have to have done is a bone scan, because my 3 aunts (the youngest is 42) have severe, early onset osteoporosis, as does my Grandfather. My youngest Aunt is already on injections for it. My oldest Aunt (who is 56) fell from the second rung of a ladder last year and compound fractured both bones in her lower arm. She is a career RN, nonsmoker, non-drinker, daily exercise, always ate healthy, and she has the hips of an 80 yr old woman. So I do have to rule out the bone component like someone mentioned. The bright spot is that I have never broken a bone, even when I had an accident that caused a knee injury and the ortho was shocked that I didn't break a bone. With all the stress and bruising the MRI showed, most people's bones would have broken. I have larger bones than they do, so hopefully I take after my mom and her mom's side. My Grandmother is 76 and she has the bones of a woman in her 50's!

Jeff, I've always had great posture, better than most people, but you mentioned my gait-- I had never thought about that before. I am taller and kind of lanky with long legs and "loose" joints, whatever that means. For the first several years I walked with a noticeable toe-out gait. More like duck toed than pigeon toed. I was also what they called "Knock-kneed" when I stood up straight and put my feet together, my knees would touch on the inside. I never did anything about it, didn't see it as important, really, but as I became more self-conscious about it and more people began to notice it, I started forcing myself to keep my feet straight. Things like that are SOOO important in adolescence, you know? LOL. So now I always walk with my feet straight, but if I relax and let my body just do what it wants, my knees still gravitate towards each other. LOL. I can tell from my shoes, too, that my self correction probably caused some issues. The soles start wearing down very quickly on the whole outer edge, evidence of the extra pressure I put there when walking to keep my legs straight and toes straight ahead. I don't even realize I do it anymore it's become so ingrained as a habit. Do you think that could be contributing to my back troubles?

I was passenger in a car accident about 8 months before I got pregnant with my son where I wasn't wearing my seatbelt (we got hit pulling out of a parking lot where my friend had taken off before I was buckled. I was holding the strap across me when we got hit.) and got a serious case of whiplash. We were hit in the side while trying to make a left hand turn at a yellow light at 40 MPH and the car turned 180 degrees. That could have something to do with it.

But, the major thing I noticed, is like someone else mentioned, pregnancy was really, REALLY hard on my body. When I was pregnant with my first is when all of the problems became chronic. After childbirth it seemed like I just started falling apart. My second was just as bad. My kids are 20 months apart. Though I had perfect, uncomplicated pregnancies with lightening fast labor and delivery, I had pain from about 6 months into my first pregnancy. Constantly. I'd always heard about the aches and pains of pregnancy, so I didn't think anything was particularly out of the ordinary. My sciatica got really bad, and there were days after he was born that I seriously could not move that leg so I was walking with the most horrible limp you've ever seen. With my daughter, I had the sciatica of course, along with feet that always went to sleep, and horrendous groin pain. I think my hubby thinks I'm a wuss or a hypochondriac, but I really can trace it all back to pregnancy.

Well, I've written another novel and I'm sorry. I just have to talk to somebody about this, but I can't talk to my hubby because he says it "depresses him" to talk about what could be wrong with me. And my 4 year old doesn't seem to care at all for some reason!

Thank you so much for your responses. I had an intramuscular steroid injection last night, and I feel SOOOO good now that it's taken effect. The Doc warned me not to overdo it, so I know the drill. Thanks for listening.
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Old 12-27-2007, 02:14 PM   #6
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Re: Degenerative disk disorder an I'm only 27. Is my life over??????

Hi

Yeah gait is very, very important! Go and see a good podiatrist and see what they say. Have you checked to see if one of your feet overpronates (or both). This can be a major cause of back trouble. Orthotics can really help (I wear them) because they restore natural foot function and improve posture, walking etc.

Sounds like you are in quite good hands though!

 
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