In too much pain to start RYB

Discussions relating to Lower Back Pain.

Postby Jackie » Sat Nov 01, 2008 9:12 pm

Hi Erica. certainly at the height of my pain I was having trouble sleeping and would be in extreme pain in the morning. Mornings are still the worst for me but I can sleep at night now. It hurts as well to sleep on one of my sides due to hip pain. I can sleep on the other side or on my back. I have a pillow in the bed to either put between or under my knees depending on the position I'm in. do you think it would help if you put some myoflex or celadin cream on your back? I put deep heating cream with aspirin in it on before I go to bed and it seems to help prevent my muscles from seizing up too much.

Surely the docs may have some ideas from the fact your pain is not easing up when you are resting. are they giving speculations as to whether or not it is nerve pain, myofascial pain? other? do you think your hip pain is referred from elsewhere or is it the origin? that's where sometimes I'm not sure if it is SI joint dysfunction or if my SI joints/hip/outer thigh continues to give me trouble because of my disc. I went to the massage therapist on Thursday and I am really sore now, she pressed on my butt cheek and oh boy that was painful.. She said all the parts are connected... hopefully will ease up a bit by tomorrow. I had a few quite good days at the beginning of the week and probably way overdid it with walking and being on my feet and am paying for it now. (but nothing like the activity level I used to have) oh well, time to hit the advil and tylenol again.

I'm positive for you that you will turn a corner, having some answers will be key and surely that will happen soon. It's crazymaking not knowing and having symptoms that match a number of diagnoses. I went crazy before my CT scan and for a long time before and after having it everything I did was flaring me up like crazy. take care, you are probably hitting the hay already, still early here on the West Coast.
Jackie
 
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Postby GUEJ » Sun Nov 02, 2008 8:49 am

I doubt it's SI joint pain either, honestly. Back doctors don't think it's nerve pain eminating from a spinal nerve. I'm not 100% convinced of that. None of the imaging studies show compressed nerves, or nothing more than a slightly bulged disc at L4-L5. I'm pretty fed up. Every day I wake up with extreme pain in that right hip/groin/outer thigh area.

Today is the physical therapy conference where I am going to the be "guinea pig", so maybe someone new can look at this fresh. I have appointments in the next 2 weeks with rheumatologist and neurologist, and a scoliosis back specialist. I need to keep going here. This non-stop pain is unacceptable. Last night I took a unisom to sleep (over the counter stuff). I slept OK, but had some bad nightmares. If my back didn't hurt so much or the hip wasn't bothering me, I'm sure I could get better sleep. I have tried some muscle creams. I'll try the ones you recommended (are they over the counter?)I'll keep you posted as things develop. I'm glad you are at least up and around. Unfortunate that the littlest things trigger relapses. I'd be happy to have one good day now...

I'll email after conference and tell you what the guys says. It may diagnose both of us!
GUEJ
 
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Postby Jackie » Sun Nov 02, 2008 8:11 pm

yes please, I'm really interested in what the physios at the conference had to say. those creams I mentioned are over the counter. I think though that many of them are the same, they have the asa in them (except the celadrin cream). Unisom gives me really weird dreams too so I usually take melatonin if I'm having a hard time sleeping. I've also started taking glucosamine and chondroitin which seems to really be helping. looking forward to hearing how it went for you today. take good care.
Jackie
 
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Postby GUEJ » Sun Nov 02, 2008 8:24 pm

Interesting, interesting day...I was examined as the "test case" in front of a classroom of physical therapists in training! The head of the conference did a thorough analysis, and within a short time was pretty confident he had diagnosed my problem. Apparently, most of my pain is coming from the Psoas muscle (never heard of it before). It's one of the largest muscles in your body that attaches to your vertebrae and runs down the groin. What happens is that the muscle contracts and stays in that contracted state (due to injury, trauma, etc). There are tons of nerve fibers that run through it. The muscle needs to be manually "released". As he was doing that, it literally replicated the pain in my outer thigh, inner groin and lower back. I also had a locked sacrum (tailbone). He believes this occured during kickboxing It all acts together...so basically, the muscle is in constant spasm because the body is trying to pull the other way, and the muscle is resisting. The spasms cause the nerve pain. I need to be manipulated because my entire pelvis is out of whack (higher on one side and turned inward). I didn't quite follow the entire conversation because most of it was in "medical speak", but in essence, all these things are connected and are causing me to be extremely tight, and in a constant state of muscle spasm. My scoliosis isn't the problem, but the fact that my spine is so rigid because of the prior fusion brought about this situation. He thought I was pretty lucky to have made it 24 years post-surgery with no similar issues.

The good news is that it is supposedly entirely correctable. It won't correct on it's own, but needs manual manipulation. I actually felt better after he had done just a few things. Of course, later today, I was back to square 1 with pain but it needs to be done repeatedly, along with some specific stretching exercise. So the plan is to be manipulated twice a week, and to go to water therapy in the meantime twice a week just to get my limbs moving again. I think I made the condition worse by just being so stressed out, immobile and stiff these past few months. I'll give it a try. I have nothing to lose. I'm not a surgical candidate, and all my bloodwork came back negative so far, so it doesn't look like it's lyme disease, etc. anyway (I didn't think it was. My symptoms were always exercise induced). I'll keep you posted. Long day...I'm sure tomorrow I'll be in traction from all the manipulation! I'm back to only one valium tonight just to knock me out. Sleeping pill made me groggy today for the 1/2 the day.

Let me know how you are doing.
GUEJ
 
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Postby Jackie » Mon Nov 03, 2008 11:08 am

Hi Erica. sounds like progress! just hearing the word manipulation makes me shiver but sounds like that's the way you need to go. How are you feeling today? don't get discouraged if you get worse before you get better, it takes time for the body to readjust, especially if you have been out of whack for a year. What is a locked sacrum? does that involve manipulation as well? I'm positive the water therapy is going to make a big difference too, hopefully you won't need too many manipulations before you get relief. are you better today after yesterday's session?

I'm doing a bit better since that last flareup, I'll find out next week the results of the bone scan and if there is joint inflammation. I got on the bike yesterday for a few minutes and went for a 20 minute walk, which is all good. I need to get back in the pool, I haven't been in over a week since I started back to work.

keep me posted!
Jackie
 
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Postby GUEJ » Tue Nov 04, 2008 5:00 pm

I cannot imagine a 20 minute walk! That must be so great. Do you feel like you are still making progress, even at small stages?

OK, so I went to the physical therapist today for the first session of these new treatments, so he explained it to me a little better. Apparently the guy who examined me the other day said I was one of the most complicated cases he has ever seen because of all the different issues involved (including my previous back fusion). Basically, the right SI joint is locked and only the left one moves. My PSOAS muscle and some other muscle that it is attached to which run between the vertebrae and hip/pelvis are in constant spasm and are contracted because they are being pulled against the way they would normally move. Scar tissue on my pelvis from where they took the bone graft for my original surgery 24 years ago, also makes the area extremely tight. They need to "release" the muscles, unlock the joint, and basically force everything to move back to where it should be instead of the contracted out of whack state it is has been in for almost a year. Unfortunately, you're working against "muscle memory", so it will be a slow and probably painful process but they are confident it can be corrected. Just a little more complicated because of the scoliosis. I was in TONS of pain when I left PT today. I guess it would hurt if you're trying to unwind your body from the state it's been stuck in for so long. Nothing too violent. Very gentle manipulations and applying pressure on the muscles. Not the jump on your back type of chiropractics I've been through before. I'm ok with this, as long as I start to see progress at some point. I'm being evaluated for water therapy next week, so I cannot wait to start that.

Good news is that I'm sleeping better, and that seems to have helped both physically and mentally. Sleeping pills were just awful for me. I'm back to one valium a night (muscle relaxer), and I'm good for about 7 hours, with a few interruptions but I can get back to sleep. I'm encouraged for the first time in 6 months, and that probably helps too.

Thanks for all your encouragement. It took me months to slide this far down. I'm sure it will take months to climb back up, but at least there's a diagnosis and a plan, which makes all the difference in the world. This site has been great. If and when I'm "cured", I will start the RYB program (subject to my scoliosis limitations). I really think keeping things balanced, stretched and strong is the key to future comfort. Now, why the bone scan for you? Where do they think you have joint inflammation?
GUEJ
 
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Postby Jackie » Tue Nov 04, 2008 6:15 pm

Hi Erica. I am so so glad to hear you are getting a better night's sleep. lack of sleep is the absolutely worst when trying to cope with chronic pain. that is exactly where I started in my recovery was that my sleep got better after my SI joints were adjusted. and the adjusments were not harsh either, my PT only did it twice, basically pulling on my right leg to release trapped nerves and realign my pelvis, and flexing my leg and hip. it really flared me up though and it took about 6 weeks for it to calm down. it felt like two lines of pain right where my SI joints are. I was a bit discouraged by the flareup recently but yes I am making progress, it is like a rollercoaster, and sometimes I will zoom forward and then plateau for a while and back slide a bit. I have to remind myself though as to how I was in the summer and how a 20 minute walk was out of the question. I also have referred pain from disc tears which is also very painful at times. I'm back to taking advil and accept that I need it right now but also am encouraged that it really is helping when three months ago advil was just a joke to take. that is progress too.

isn't it amazing how much good pt's can do and diagnose? I am positive you will see more progress in the very near future and yes, you will be brutally sore from the manipulations. I remember phoning my PT up when he realigned me the first time as the pain was brutal and he told me to max out the antiflammatories and not move.

the dr. who did the cortisone shots was the one who ordered the bone scan because of the SI joint and hip pain. she is checking for arthritic changes/joint inflammation. I am considering an SI injection, I also have trouble with my right one but maybe the massage therapy will be enough. I go for trigger point massages which is a form of muscle release as well. that's what contributed to my last flareup so I'll have a chat with ther therapist about that.

I was so encouraged to hear from you that you have a solid treatment plan instead of that going around and around like a hamster on a wheel. let me know how you are doing, I am absolutely positive you are on your way to recovery. take care, have an awesome sleep.....
Jackie
 
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Postby GUEJ » Wed Nov 05, 2008 7:21 am

It's always so great to read your posts. You really were where I am now, and it's so encouraging to see that you can move forward. I laugh when people ask me, "but are you taking Advil?". I call them tic-tacs! I felt better when I read your post today.

Yesterday was the first day of my new "adjustment and muscle release treatments", and OH MY GOD was I in pain afterwards. Now I know definitively exactly where my SI joints are because they hurt so much! I guess when you try to unlock or move something that hasn't moved in a year, it's going to hurt. Unfortunately with me, lots of related muscles and tissues got dragged into this over the past year, so that I have an entire side of my torso fighting against being moved back to where it belongs. Add the existing scoliosis and rigidity of my spine, and I'm in for the longhaul here. I am hopeful though.

FYI: I happened to be speaking to a woman at work yesterday and filled her in on what is going on. She told me she was born with one of her SI joints partially shut or fused (basically, it barely moved from birth). Because her father had the same condition, they diagnosed her early. She has managed to control the condition her whole life. She has on and off flare-ups and muscles spasms, but has a good osteopath who adjusts her, and sends her on her way. She said sometimes it takes one visit, sometimes it takes 3 weeks, but she always gets back to normal. Good news for both us. If you have a good doctor who really understands your condition, stick with him/her. If not, get one. You'll have to let me know about the SI injection. I was scheduled for one yesterday but cancelled it after I got this diagnosis. I have been injected 4 times in the past 3 months (2 epidurals, 1 nerve block, and injections into 3 facet joints), so I wasn't in a hurry to go there again unless it was necessary. I think my issues are mechanical, and not necessarily irritation within the joint. Let me know what they do with you. I'm seeing my pain management dr. on Thursday to fill him in and we'll talk about the injection again. We'll compare notes! Good luck!
GUEJ
 
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Postby Jackie » Wed Nov 05, 2008 6:02 pm

Hi there. I am hearing optimism in your posts, loved the comment about calling advil tic tacs. also love a sarcastic sense of humour, at my worst I called it my "crazy pain". I'm not in a real hurry yet either for more injections. you are very brave, must be feeling like a pin cushion. I almost fainted when I had the first set, what a wus. I'm going to wait a bit longer to see if the SI joints improve more before I ask about more injections. I have a good doc but don't have that formal diagnosis so she is more focused on the disc pain but still listening and believing me about the SI joint pain. that is good what your colleague said about her SI joints and osteopath.

yes, would love to hear what your pain management doc has to say, it will get better, I'm at the 3.5 month mark since starting physio and progressing bit by bit, like you said, being out of whack for a year it will take time but I'm sure you will notice improvements soon. Ill let you know if the bone scan shows anything. take care.
Jackie
 
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How are you?

Postby Jackie » Mon Nov 17, 2008 8:14 pm

GUEJ wrote:It's always so great to read your posts. You really were where I am now, and it's so encouraging to see that you can move forward. I laugh when people ask me, "but are you taking Advil?". I call them tic-tacs! I felt better when I read your post today.

Yesterday was the first day of my new "adjustment and muscle release treatments", and OH MY GOD was I in pain afterwards. Now I know definitively exactly where my SI joints are because they hurt so much! I guess when you try to unlock or move something that hasn't moved in a year, it's going to hurt. Unfortunately with me, lots of related muscles and tissues got dragged into this over the past year, so that I have an entire side of my torso fighting against being moved back to where it belongs. Add the existing scoliosis and rigidity of my spine, and I'm in for the longhaul here. I am hopeful though.

Hi Erica. I'm just wondering how you are doing since starting the physical therapy/manipulations? did you get into the water therapy? I hope you are on the upswing. take care. Jackie

FYI: I happened to be speaking to a woman at work yesterday and filled her in on what is going on. She told me she was born with one of her SI joints partially shut or fused (basically, it barely moved from birth). Because her father had the same condition, they diagnosed her early. She has managed to control the condition her whole life. She has on and off flare-ups and muscles spasms, but has a good osteopath who adjusts her, and sends her on her way. She said sometimes it takes one visit, sometimes it takes 3 weeks, but she always gets back to normal. Good news for both us. If you have a good doctor who really understands your condition, stick with him/her. If not, get one. You'll have to let me know about the SI injection. I was scheduled for one yesterday but cancelled it after I got this diagnosis. I have been injected 4 times in the past 3 months (2 epidurals, 1 nerve block, and injections into 3 facet joints), so I wasn't in a hurry to go there again unless it was necessary. I think my issues are mechanical, and not necessarily irritation within the joint. Let me know what they do with you. I'm seeing my pain management dr. on Thursday to fill him in and we'll talk about the injection again. We'll compare notes! Good luck!
Jackie
 
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Postby GUEJ » Tue Nov 18, 2008 7:18 am

Not good. The pain is spreading to my upper back and neck, and the leg/thigh/groin pain is as bad as ever. I'm seeing a new physical therapist who specializes in myofascial pain (which is what they think I have). Everything just hurts. A rheumatologist I saw is saying "fibromyalgia", which I hope it is not. They are running additional blood tests on me to look for other causes to all the other weird symptoms I'm having (loss of weight, etc). Due to pain, I'm back to sleeping only a couple of hours a night. It's a vicious cycle. The insurance company hasn't approved the water therapy yet, so I haven't been able to start that yet. Bummer. Just feel like everything is going downhill again. I know I need to hang in there and give this time, but it's tough when you are actually feeling worse than better, and still not 100% sure you have the right diagnosis.

Are things continuing to get better for you, Jackie? I hope so!!!
GUEJ
 
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Postby gourd_girl » Tue Nov 18, 2008 12:27 pm

Erica,
Sorry to hear you are not getting any relief. If you are going to a myofascial pain PT you are headed in the right direction. The PT I have been seeing who has pushed me over the hump concentrated on loosening up my muscles, and then giving me non-traditional gentle stretches to balance everything out. When I first went to him one hip was "stuck" backwards (from burying the cat back in Nov. of last year). I had been doing other PT stuff (RYB, some yoga, any new thing I could find) since March of this year trying to get it to release all to no avail. Luckily, he was able to manually loosen up the muscles enough that the hip released. Unfortunately when it released, it was then loose and floppy since it was stuck in the wrong position for so long. So I have spent the last 2 months trying to build up strength in that leg. It has been slow, but successful. The thing that I have found MOST helpful is to do some sort of muscle building activity in addition to the stretches (no matter how little it is, it makes a difference - you have to keep moving - weights on your ankles and lifting the leg a little further each day, walking as much as you can - sideways and backwards to reingage the proper muscles). Otherwise I was just stretching too far without any resistance and then in real trouble. Even though I am mobile, I still have sciatica down my legs at times, and my muscles are still in knots. Even last week I thought I might have fibromyalgia, but googled it and found a site and it tells which 9 tender points you must have to be diagnosed, and I just don't have them, it is still just tight muscles. Stretching my achilles tendon has helped with the sciatica, and riding the bike 5 min. each day has built up enough resistance that I can get good stretches. I also found that if I rub my legs (thighs, down the side of my thighs to my knees, that has loosened up the muscle knots, I also take a rolling pin down the side of my leg to relieve some of the knots). I also found a book at the library by Pete Egoscue, "Health Through Motion" and incorporated a few of those stretches too and have gotten closer to normal, some were not helpful, so I only do the ones that helped. Unfortunately, you don't always know which ones will help - it's hit or miss. Each week I feel a little closer to normal. By next time change I hope to be there. You can too. Keep the faith and keep at it. You'll get there... Hope you have a good day. Brenda
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Postby GUEJ » Tue Nov 18, 2008 2:08 pm

Thanks Brenda. I needed to hear that. I've only been with the new PT for 2 weeks, and I know in my head this will take a lot of time. I just need to see the tiniest smidge of improvement to get feeling of hope back again. If there is some improvement, there can be more!

I'm still waiting to get approved by my insurance for water therapy. I think that will help me a lot. I've been very stiff for a few months now. I went to a regular pool about 2 weeks ago, and it really caused a flare up. I think the water was just too cold. A therapeutic, heated pool will be great. I don't think I have fibromyalgia either. I just have a whole series tight muscles that started small, and just cascaded because I wasn't being treated for the right thing. I do still think there is something else going on. I lost 15 lbs in 2 months, and although I am eating 3 meals a day, and lots in between for the past few weeks, I have been unable to put back on a single pound, and I have all sorts of digestive issues when I get up in the morning. It's no medication because I've tried different things. Just doesn't seem right. I have to still look down this avenue while I'm in PT. If there is something else going on, it's going to hold back any healing altogether. Thanks again for your post. I'm glad you're making progress.

So what's the prognosis? Are they telling you that someday you'll be back to "normal" and do you expect to engage in anything athletic down the road (ski/bike/swim?) Right now, I can't imagine going back to any type of workout.
Erica
GUEJ
 
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Postby Jackie » Tue Nov 18, 2008 9:04 pm

Hi Erica. I'm really sorry as well that you are still in so much pain. I agree with Brenda, don't give up on the PT, if your body has been out of whack for so long the manipulations are going to be brutal. It took 6 weeks of PT 3X a week, and daily walks in the pool before I could stand for longer than five minutes on solid ground, and over three months before I saw any significant improvement.

and yeah, I hope you get the water therapy approved soon, I go to a public pool but don't swim in the lap pool, just the "family pool" which is quite warm, and then go into a really warm wading pool (the hot tub is way too hot) and that melts away any exercised induced aggravation. your muscles do have to be warm, especially if they are all seized up. have you tried bathing with epsoms salts? are there any natural products that have helped with pain relief? I'm sure you have tried dozens of things, I know I have.

I am improving, but the progress has slowed down, a bit frustrating. My SI joints are still really tender but at least I can manage an hour or two at the mall most days, limited part time work, and I am able to sleep on my right side again for periods of time. I'm still batting with pain but it is manageable now, went from an 8-10 to a 2-4 and some days are pretty darn ok. When the massage therapist presses on my butt cheek just inside my hip that's supertight and painful. she does trigger point massage which is good for myofascial pain.

If they suspect fibromyalgia, as I had mentioned before, Lyrica is the drug, maybe a trial of that would hopefully either rule out that diagnosis???? or bring you relief? probably you are way past me on that suggestion, you are a very resourceful lady so forgive my repitition. I am so hoping you start making some lasting improvements really soon. it is really frustrating to have flareups, but I really believe you will get your life back. I know right now that is hard to believe, I didn't believe it either for me. please take care, I have been wondering about you. keep in touch.
Jackie
 
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Postby GUEJ » Wed Nov 19, 2008 7:34 am

Thanks Jackie. It's always good to hear from you. Right now, it would be a dream come true to walk a mall for an hour or have pain on a 2-4 scale! I'm sure you couldn't see that efar ither when you started out. I guess I would be OK with slow progress in PT, and a long term approach, if I felt 100% sure it was all just myofascial pain, and that there was nothing else going on. I just feel like something else is not right, so I have to keep chasing those symptoms.

I am hoping I can get a decent amount of pool therapy just to get moving again. Right now, I just sit in a hot bath 1-2 times a day, and am almost completely pain-free, which makes me feel like it's definitely muscular. Right now, the rheumatologist has me on amitriptyline, which is supposed to be a mild anti-depressant that is used for fibromyalgia and myofascial pain to help with sleep and pain. So far, no help with pain. So-so on the sleep. I think I did better taking one valium a night (muscle relaxer, and knocked me right out). My back and neck are so sore. I don't know if it's just because everything seized up on me over time. I am seeing a massage therapist who does great trigger point massage on that part of my body, so hopefully that will ease up over time. That actually prevents me from sleeping well.

I'll keep you posted on whether they find anything else, and how PT is going. Thanks for giving me a realistic time frame. I think that's what I needed. Hope you continue to improve. It must be frustrating not be back 100% by this point. I guess it took years for my imbalances to get themselves all worked up. They aren't going to be fixed overnight! Thanks again.
Erica
GUEJ
 
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