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In too much pain to start RYB

PostPosted: Sun Oct 19, 2008 9:43 am
I'm sure many have been in the same scenario, so I'm looking for some feedback. I went from having a "simple" sports injury, to all out back and right leg debilitation within the past 2 months. I have been religiously to my physical therapst (who is wonderful, and works with me to my capacity), but over the past few weeks, every single move seems to "blow up" my back. I can't figure out whether activity or inactivity is making it worse. Now I have not only leg and hip pain on both sides (it started only on one side), but "locking" of my lower back when i sit or stand.

I have had numerous imaging tests and am scheduled for a bone scan this week to rule out fractures, tumors, etc. Tests thusfar, don't show anything out of the ordinary other than a little DDD, but nothing that would indicate nerve impingement, etc. I'm afraid to do anything right now for fear of making it worse. I have 2 kids to take care of, and if I get any worse, I'm going to have to hire fulltime help. I can barely get around as it is. In everyone's expert opinion, is it better to wait it out a bit more to try to figure out the "cause" (if there is one), or try the exercises. I had scoliosis fusion surgery 24 years ago, so i'm sure sure that has contributed to weaker muscles in some areas or just overuse of other joints. Any thoughts?

just my opinion

PostPosted: Sun Oct 19, 2008 8:26 pm
by Jackie
Hi there. I just wanted to share with you that I had a diagnosis of mild DDD via an xray and did start doing a lot of the book's exercises to see if I could get rid of persistent back pain. I found out the hard way that I should have persisted with my dr for a ct scan and/or MRI, instead I just kept injuring my back doing exercises I shouldn't have. I don't have nerve impingement either but I have tears in my discs which have been causing a lot of pain called discogenic pain. the pain got so bad I had to take leave from work. with a detailed diagnosis the physio was able to provide better direction re: the proper exercises that wouldn't make my condition worse. I hope you find some answers soon and that this helps.

PostPosted: Mon Oct 20, 2008 4:26 pm
Did you diagnose the tears in your discs via MRI? And was a physiatrist the main doctor you dealt with through this? I am really at my wits end. I've had MRIs, CT Scans, Xrays, etc. I've been seeing an orthopedic and a pain management doctor. Still no diagnosis that would correlate to the level of pain nor the downward spiral I am on. I am wondering if a neurologist or physiatrist would see anything different? Just wondering....

I am going for a bone scan soon to look for stress fractures, etc. I'm thinking maybe rheumatologist next or neurologist. I can't be this bad with no answers in sight. I'm pretty much bedridden this week, and this has been spiraling downward for months.

Anyone else have any thoughts on the right doctors to see?

help with diagnoses

PostPosted: Mon Oct 20, 2008 10:37 pm
by Jackie
Hi. Are you Erica from a post a week ago? I will try to answer your questions as best as I can. It was my GP that ordered a CT scan which said I had a disc herniation but no nerve root impingement. She referred me to a neurosurgeon who suspected discogenic pain and ordered an MRI. the CD ( I have it) pictures clearly show there is no stuff poking out of the disc anymore, but there is still a tear there, and he showed me the bottom discs are grey in colour. he said that it could take a couple of years for the pain to subside, however I did go from bedridden in June and July and most of August to a turnaround in Sept. I still have pain but it is much more manageable and I am continuing to improve so don't lose hope. I have also been in pain for over a year and it evolved much the same way yours did, to the point of complete debilitation, where you are right now. I live in Canada and I haven't heard of physiatrists here.

I also have SI joint pain which the physiotherapist discovered through a few simple test stretches and a hot spot right on the joint. He realigned my SI joints and I have been spending 3-5 days a week just walking around the pool and doing a bit of breaststroke.

It was a spine pain management DR. who has now ordered a bone density scan for my SI joints. By the way the ESI's didn't do a whole lot for me either for the pain but I think they helped me to heal faster.

I really feel for you Erica, back pain has really had a terrible impact on the quality of my life as well. You are absolutely right though, there is no way you can be in such debilitating pain without there being an answer and a satisfactory resolution. I haven't been to a reumatologist so can't really say but maybe someone else can comment? I would love to hear back. Hang in there, you will get your life back!

PostPosted: Tue Oct 21, 2008 6:23 am
I just cried when I read your post. I feel like I am hitting rock bottom and never getting out of this. Every week gets worse, instead of better. I am basically "outsourcing" my kids because I can barely take care of them.
I am Erica from a week ago. While I have been working with a good ortho and a pain management doctor, it may be time to see a neurologist. I don't want to put too many hands in the pot, but I have been pretty bad since June, and REALLY bad since September and getting worse. I have had an MRI wth dye and CT scan with mylegram done, with no remarkable results. Maybe the bone scan will show something. I just need to know this won't be forever... I would be thrilled to be even a little better so I could begin a rehabilitation program. If I felt better in bed, I would be bedridden. Unfortunately, every inch of me hurts, so sometimes it's better to be up and moving a little. Thanks so much for the encouragement. I seem to hit a new low each week as I take one step back, and none forward. Unbelievably frustrating. I am going to look into my SI joints too. There is a physical therapy conference in my town in 2 weeks. My physical therapist arranged to get the head of the conference to examine me as a "difficult test case". Maybe he'll be able to shed some light too. I was a healthy, active and happy 40 year old a year ago. This cannot be my life.
Thanks again for your response. I would love to start RYB, but I can't move at the moment!

PostPosted: Tue Oct 21, 2008 8:41 pm
by Jackie
Hi Erica. I think you are doing everything you can. I would want to see a neurologist as well. also sounds like you have a fantastic physical therapist. It's really hard when you have kids, I know my kid spent most of his time playing videogames this summer instead of enjoying the waterparks. please hang in there and keep in touch. I didn't think there was a light at the end of the tunnel and it is very hard to keep hope up with such terrible pain. there is a light and I'm positive you will find it soon. take care

PostPosted: Wed Oct 22, 2008 7:51 am
by Puddy
Hey Ladies,

Chronic pain sucks. I've tried just about everything except voodoo. The closest I got to some relief was physical therapy, but after a month or so, I re aggravated the area. I found some interesting info on the web about prolotherapy. The case studies are what I'm hanging onto for hope now. These poor people were worse off than I am right now.

Unfortunately, this forum doesn't allow urls, so I can't give you the address. However, if you go to yahoo, and type in the following...

A reasonable and conservative approach to musculoskeletal low back pain should be able to find the article. For me, it was the second link available. The article is an Adobe Acrobat document so you'll need to have the Adobe Acrobat Reader to view this file. You can get that by going to adobe dot com...sorry if I just bogarted the integrity of the site.

Its about 34 MB which means it could take a while to download depending on your connection.


PostPosted: Wed Oct 22, 2008 6:10 pm
I'm 2 steps ahead of you! I found some info on prolotherapy on this forum about a week ago and started looking into it. I have an appointment with a prolotherapist in my state (not too many out there) for the first week of December (or sooner if they get cancellations). In the meantime I continue to rule out other sources of the problem. If the ortho can't figure this out, there is no harm in my opinion in giving prolo a shot. No one else seems to have an answer thusfar, so I'm tired of hopping from one doctor to another. I need to feel like I'm being proactive about this and not relying on the every other week "follow-up" appointment which thusfar, has no lead to nothing. Thanks for posting, and I'll let everyone know how it goes.


PostPosted: Thu Oct 23, 2008 10:25 am
by Jackie
Hi. are you going to try prolotherapy for your SI joints?I saw in your other post your dr. poo pooed that as possible cause of back pain. I read somewhere SI joints is very common cause (15%). My other question for you is if you have been offered any other meds for pain management other than valium to help you sleep?? trying to cope with pain 24/7 while you are looking for answers is terrible. I've been there and really feel for what you are going through.

PostPosted: Thu Oct 23, 2008 11:32 am

My bone scan came back pretty clean today. It was almost disappointing. I was hoping they were going to find a mystery fracture! Anyway, I am going to try to get a diagnosis of S1 joint syndrome from a doctor or physical therapist before the prolotherapy in December. I don't want to just go through shots in the dark either.

As for pain meds, I have tried vicodin, percocet and dilaudid. All of them make me nausceous and dizzy and so non-functional. I started taking Ambien CR about a week ago to help with getting more than the 4 hours of sleep I've been getting. It made me so incredibly groggy all day long and again, non-functional. I was pretty skinny to begin with, but I've lost about 10 lbs in the past 6 weeks, and i really think it's not only the pain that is causing loss of appetite, but the pain meds completely killed my desire to eat. It's another reason why I try not to take anything. I felt so "disengaged" from my family. At least now i have a clear head, but in lots of pain, while the kids are home. I had to stop the Ambien. I had really bad side effects. I'm just trying valium and tylenol PM at night, which is going ok, but giving me incredible dry mouth. I made an appointment with a rheumatologist also. My general practitioner felt a rheumatologist looks for things an ortho wouldn't. Thanks again for checking in. This has been such a disaster, and getting worse by the day. I am really at the end of my rope. I live right outside of New York, so I have a few appointments with specialists set up for November. It's going to cost me a fortune, but you would think they generally get a lot of the best doctors. Someone has to figure this out at some point!

PostPosted: Thu Oct 23, 2008 7:33 pm
by Jackie
Hi Erica. I can relate to not wanting to deal with the side effects of the pain meds. sometimes you have to weigh out what it's worth. I was taking arthrotec but it felt like it was eating holes in my stomach so I now manage on over the counter meds. Do you have to pay to see specialists? health care is so different between the U.S. and Canada, seems U.S. is much better at being quicker with the diagnostics, our waitlists are huge for MRI's, specialists and surgery unless we opt to pay privately, which I did for my MRI. hope you get some answers, especially before trying the prolotherapy. I read that SI joint syndrome can be tricky to diagnose if it is caused by ligament damage. surely one of these specialists would know though, it seemed pretty clear according to my physiotherapist. take very good care of yourself, I admire how proactive you are.

PostPosted: Fri Oct 24, 2008 5:47 am
Thanks Jackie. We definitely move faster to tests and doctors if you have health insurance. Unfortunately, still not quick enough for me! I'd like to check myself into a hospital, get some pain relief and figure this out NOW, but it doesn't work that way. I just got up after another night of 4 hours of sleep. My back is so inflammed or sore, no sleeping position is comfortable. Nothing seems to make that pain go down. I am going to have to go back on the Ambien (at least during the weekend when I don't have to worry about getting the kids off to school). I need to catch up on sleep, and the only way I do that is if I'm completely knocked out. Otherwise, I wake up from the valium after exactly 4 hours and I'm in too much pain to go back to sleep. It's awful. If I could figure out a way to sleep standing up I would! I'm trying to be proactive but every test and every doctor's appointment never brings a diagnosis or plan to fix this. It is very discouraging. I really am losing hope and every day it gets physically worse. When you were bed ridden, were you sore from just not moving around? It hurts now to just lean on any body part. I think I still have the original injury, but the rest of my body is overcompensating and really taut from stress and pain. Oh well. Another day....I work from home and I finally had to tell work yesterday that I needed to take some unpaid time off. I just can't concentrate. I'm a part-timer, so I won't get disability. Just what I need in these tough economic times!

PostPosted: Fri Oct 24, 2008 8:30 am
by gourd_girl
I noticed you were taking serious meds. Did they ever suggest an anit-inflammatory. That's all they ever prescribed for me, although I was to a point where I was asking myself "why aren't they giving me something stronger than this'. You may want to ask your doc. I know it's hard to even start on the RYB program at this point, but you have to keep yourself moving, even small steps, or your body will sieze up. If you are laying down a lot, just move your feet in circles to get some blood flowing and loosen that part up. Next try to stretch your foot forwards and backwards just to loosen those muscles up a bit. Take your hands and open and close them, rotate your wrists around, get your blood flowing. If your legs are super tense, which I'm sure they are, contract your muscles, make them as tight as you can and then release, that will usually allow the muscle to relax a bit. Remember to drink plenty of water, as dehydration will make you feel worse. If you can sit for any amount of time try the following (this is what my new PT suggested and it has helped me turn the corner):

Sit up right with hands on your stomach. Turn your torso to one side and then the other and notice if there is an easier side to turn to. Whichever side feels easier/looser, turn to that side and hold for 15 seconds. Repeat 3 - 5 times. Continue to do this 3-5 times throughout the day, always checking to see which side is easiest, because it will change as your body becomes more balanced.

Continue to sit up right, now raise one arm straight up above your head, then raise the other arm straight up, and see which one is easiest. Whichever one is easiest, raise your arm straight up and hold for 15 seconds, when you get to about count 12, stretch back a little further and hold for the remaining 3 counts. Repeat 3 - 5 times. Continue to do this 3-5 times throughout the day, always checking to see which side is easiest, because it will change as your body becomes more balanced.

When you do these, it will feel odd at first, but that's because you are making your muscles go to a new position that they are not used to. It will eventually even out. This can be done for any part of the body basically. But he said those 2 are the easiest that have worked for him. I'm sure there is always a tight side that we stretch to, and instead of backing off, we try to push the stretch. If you stretch to the easy side more, then you will feel your body begin to balance everything out.

Last one: I'm not sure how this would affect you since you had surgery, you may want to skip it, your call. Sit up right again. Now slump and then sit as straight as you can. Repeat 3-5 times. If you are seated for long periods, do this at least once an hour. It really strethces those back muscles and loosens them up.

One more: Lie down flat on your back. Put a pillow to the side of each leg. Take one leg and bend outward towards pillow, to allow the outside of the leg to rest on the pillow (like a figure 4) . You don't want to stretch to the point you have pain, so you might have to get several pillows. Once you get the position where the leg is stretched out without pain, hold for 15 seconds. Then do the other side. Do this 3-5 times a couple of times a day. Once you get through a week or 2, increase the stretch to 20 seconds. You should get to the point where you can decrease the amount of pillows you need to prop the leg. Again, don't overstretch.

If you can, you might want to see a massage therapist to loosen you up a bit. Try walking around the house for 5 minutes at a time several times throughout the day, as much as you can stand it. Lay down as you need it. Don't push it, but keep moving, however slowly it might be. Your stamina will build up, and you will be able to go farther each time. Don't let your muscles keep you a prisoner, just keep moving. As you walk, walk sideways, and backwards to activate those muscles too (maybe just 10 steps at a time, and then build up). I know it sounds like baby stuff, but sometimes we find ourself at the very bottom, and have to relearn everything again very slowly.

You CAN do this. Let me know how this works. Good luck.

PostPosted: Fri Oct 24, 2008 8:51 am
Thanks Brenda. I printed out your post and I will try some of these. I'm getting awfully sore from sitting so much. My problem is that the original injury (whatever it is) is worsened when I walk or bear weight, so I do try to sit a lot. I will try to do easy stretches just to get moving. I am starting to see a massage therapist this week. My back and neck are so tight. I also just came from the doctor's office and had them run a series of blood tests. I just don't feel right, and I want to make sure there isn't some type of autoimmune issue on top of the "sports Injury" or whatever it is that I have. I'll take your advice starting today and I'll post again in a few days. I was an athletic, mover all my life. It is horrible for me to be this incapacitated and inactive (even basis activities I can't do). I need to start turning this around (even while the dozens of doctors try to figure out what is wrong with me).

Thanks again for the advice. I really appreciate it, and I am trying to stay off most meds because they just make me groggy and sick.

PostPosted: Fri Oct 24, 2008 9:41 am
by Jackie
Hi there, Erica you do need to do what you have to to get that pain down. Severe chronic pain has serious impact on emotional health and just trying to survive day to day is not a life. I did go to the hospital in July as I couldn't even stand long enough to have a shower and they gave me a shot of toradol, which is a really strong antiflammatory. it did help for a few days. They gave me that as I can't tolerate pain meds well either.

I read your post Brenda, it is all about baby steps and to keep moving for sure. Erica, to answer your question, yes my muscles were seizing up from not moving, and standing and walking was getting harder and harder. your body is going to try and compensate for the injury. after the PT adjusted my SI joints I couldn't even stand for five minutes. he strongly advised non weightbearing movement and exercise, walking in the pool and five minutes 3x a day on the exercise bike. boy I'll tell you that really flared me up but I also started to get better. and like Brenda said, only five minutes of walking at a time. it's finding a balance between keeping your muscles moving and not flaring yourself up where you end up back in bed.

really good idea to be tested for autoimmune disorders and other possible illnesses, you have to check everything. I hit emotional rock bottom over the summer and it is no place to be. keep believing you will get better, because you will. There are two women out there who know it too.