In too much pain to start RYB

[GUEJ]

Thank you ladies! I had another horrible sleepless night, and then this morning my husband took care of the kids as usual and put them on the bus, and I barely interacted with them before they were gone for the day. I feel so useless, and yes, it is definitely taking an emotional toll. Between the lack of sleep and all the crying, the bags under my eyes would definitely warrant the increased "baggage" fee at the airport. I guess I have been trying to stay quiet to 'heal", but it's not working. In fact, I feel like I'm going the other way. I wound up in the hospital last month. I just felt like I couldn't breathe very well after taking percocet, and my pain was so bad. Unfortunately, once they check your vital signs, and don't see any major trauma, you get discharged. They did give me a dose of pain reliever, and of my GOD, for the first time in 4 months I had no pain for 3 hours. I forgot what it felt like not to always "feel" your body. I will definitely try a little more movement each day. Staying still and laying around certainly hasn't helped.

Thanks again for the encouragement. So many people tell me there is an end in sight. I just can't see or believe it right now. I'm usually a very happy and positive person, but this has really kicked my a--.

[gourd_girl]

Erica,
Jackie is right about the bike. That really inflamed things at first, but it works the best. I have only been doing 5 min. per day once a day for about the last 3 weeks, and am getting ready to add another 5 min. rep each day and work up from there. I have been walking 20 min./day (at first shuffling, now real walking), and feeling stronger each day, but the bike really balances things out better than walking. The numb foot on one side and sciatica on both legs has gone, and is working its way up, now pain just in my hip/buttocks area. But I'm stronger and more functional now, and will continue with both cautiously. Good luck.
Brenda

[GUEJ]

Thank you. I'm so glad things are backing off for you. I have huge inflammation in my upper back (far away from the original and constant pain source in my hip/buttock/thigh area). I can't even lay on my back or lean against a chair. Anti-inflammatories don't work at all, which is why I really am beginning to think there is something wrong with my immune system. In the past 3 weeks I have done nothing (doesn't help with inflammation), done some easy stretching (again, no improvement), and back to anti-inflammatories with no relief. It really is what makes the entire injury unbearable. When the pain is just in the original spot (right side), or on the opposite hip from overcompensating, I could at least sleep at night. The constant inflammation of the entire back for such a long period concerns me. I had some blood work run today, and I am lined up to see a rheumatologist, so hopefully we'll either find the cause or rule out further. I'm trying to move more today. Thanks for all the good advice.

All my friends who had sciatica fully recovered over time as the inflammation went down, and know their limits to minimize flair ups. My original injury has never been one that radiated down further than my thigh, and never responded to anti-inflammatories. I really think I have some type of nerve impingement or irritation that won't calm down. Lots of doctor appointments next week. I just need to get through the weekend....Husband just arrived home early from work. What a Godsend he is.

[Jackie]

Hi Erica. really hoping you have some answers next week with the rheumatologist and that he can identify the type of pain you have so you can get the right meds and have more control over it. Lyrica is supposed to help with nerve pain, don't know if you've been offered this or if it's even appropriate. I know, I hate the meds too but surely there has to be something out there that is tolerable enough. really glad you have a supportive hubby....go easy on yourself
Jackie

[GUEJ]

I did ask my pain management doctor (anesthesiologist) about Lyrica. He is not in a hurry to prescribe it until we determine that it really is nerve pain. I actually respect the fact that he's not throwing meds at me left and right. He's still searching for the root cause of the pain, and then hopefully a treatment, or if necessary, the appropriate medications. It is just taking FOREVER. Maybe not forever, but 4 months of chronic pain and no life sure feels like forever. I remember when 4 months went by with the blink of an eye. These 4 months have been the longest of my life, as is every day in pain. I'll post next week after I see a few of the doctors. Thanks for keeping me company on-line!

[Jackie]

Hi Erica. just wondering how you are doing??? able to move around a bit more? sleep a bit better? any relief? take care
Jackie

[GUEJ]

Thanks for checking in. Well, 2 orthopedic back doctors over the past 2 days have concluded this is not a "back" issue. Nothing on the films or tests seems to connect to my pain. I've been having lots of other weird symptoms, so now I have to get into a rheumotologist for some blood testing. I'm also going to see a neurologist to see if it's some type of peripheral nerve issue. In the meantime, I've looked into water therapy. I am still useless on land. There is a place close to home that has a heated small pool and therapists who work with you in the water just to get you moving in a way that is less stressful than on land, until you can work you way up to normal physical therapy. I'm trying to get insurance to approve.

My pelvic MRI and bone scan came back clean (which I should be greatful for...). Sleep, somehow, is getting better. I'm only taking valium again, which isn't too bad. When I combined that with AMbien or Tylenol PM for some extra hours, I was completely out of it the next day. Not good. However, I am so stiff and in pain in the morning. Is that normal? Maybe I have an arthritic condition behind all this, that is more than jus the usual aches of aging. Hopefully I'll be able to get testing soon. I'll keep posting. Thank you for checking in. I'm getting help for myself and my kids, which is good, but so absolutely depressing to be at this stage with no end in sight....

[Jackie]

Hi Erica. glad you are sleeping a bit better with less med cocktails. Is the rheumatologist looking for things like lupus, fibromyalgia, alternative causes for your pain? All of this is fairly new to me as I haven't had the ongoing tests and specialist consults. I've been referred to a pain clinic but that can take a year or longer to get in. specialists usually take about six months to get in to see. I really hope you get covered for the water therapy, it really did help me to do the non weight bearing movements until I could stand for longer than 10 minutes. yes, the mornings are the worst for pain and stiffness and I can usually tell in the first couple of minutes what kind of a day I will have. If you had arthritis wouldn't it show on the bone scan? I had one of those the other day, pretty weird, was given a card to say I'm radioactive but safe to cross the border. I guess age is creeping up, I'm 44 but I hate it when age is mentioned as a factor. I went to an acupuncturist that said things that made me feel like the next stop was a nursing home. we are too young to be struck down like this and there is an end in sight. I am getting better but it is a very slow process and you will get better too. it must be incredibly frustrating to not have an answer. I have to admit though, I hope you have answers before going for that prolotherapy. I've considered it but there is something that scares me about it. sorry about the ramble. really glad to hear back from you. take care
Jackie

[GUEJ]

Jackie
Your post was very timely. I met with my pain management doctor today who is an absolute saint. Love him. I questionned him about prolotherapy. This guy does a lot of injections for diagnostic purposes and treatments, and he's a skeptic about prolotherapy. I cancelled my December prolotherapy appointment....I'm may still look into it down the road, but I really want to make sure I have the type of condition it can even help before going down that road. I have an appointment with the rheumotologist in 2 weeks. The woman is supposed to be fantastic, and should test me for all that you mentioned, and more. The fact that the pain is now migrating to other parts of me is not good, so I need to rule out those diseases. Also, I am going to try SI joint injections next week. It is the general area where I have the most pain, and would make sense with my back history, and the extra strain on those joints due to my my prior fusion. We'll see....

In the meantime I spend all my life on the phone making appointments, going to them, and trying to get insurance to pay for them. It's a fulltime job...If insurance approves aqua therapy, I am so very much looking forward to that. I really need to start moving again. I really believe it's part of my problem. The doctor game me ultracet (tramadol) today. He said it is much lighter than some of the other pain meds i have been trying. Apparently it's important to break the pain cycle to try to heal a little. Between fragmented sleep and pain 24/7, my body has no chance to heal, and is, in fact, getting worse. He's worried I'm developing fybromyalgia from the original untreated pain. I'll give it a try.

Let's keep in touch. I want to know how you are doing too. I'm 40 and in a horrendous state. You're too young too to be this incapacitated. Let's keep plugging away. I'm refusing to become a life long "pain management" patient. Best regards.

[gourd_girl]

Erica,
Did you try any of the stretches I gave you? They helped me turn the corner. I thought I had gotten to the point where each side was even, no easy side, but when I went back to the PT the other day he said to stretch further and it has made a difference once again. I'm guessing he is a combo PT/massage therapist, among other things, so he always loosens up my muscles first, and then has me do the different stretches. This time he said it was time to elbow my hip - my left hip/leg has been the problem since I buried the cat last year. So he had me on my side with the bad side up and he took his elbow and dug it into my muscles, starting at my hip/buttocks and went down to my knee (the length of the IT band). Boy did I have a thousand tender spots, it's just completely in knots, even now. But he told me I could do it myself with a rolling pin. I've been doing that and it is still super tender, but it's breaking up those knots slowly and the muscles are starting to feel more supple.

On a very good note, I went back to the field this week for the first time since May. In my job I have a certain amount of field work that I have to do, and since my body has betrayed me, I have been having the graduate students do all the field work. Wednesday I went out and collected cow poop (I know, gross) in a field and inside a dairy for 2 hours in the morning. I did a lot of shoveling, scooping up the fresh piles, and carrying them to a big plastic tote. And then did some more field work applying it in the afternoon for a couple of hours, bending, squatting, etc. My muscles felt sore afterwards, but not nerve pain like I have had in the past. Went back yesterday for a little bit and will have to go back tomorrow for a little bit. I'm going slow and being cautious, and if I feel a twinge at all, I'll stop what I'm doing and bend back and stretch a bit, or just stop. I've been working up to this for 2 months, and I certainly couldn't have done it then. But I'm feeling stronger every day now. I know you and Jackie both can get there. Keep a positive attitude and have patience. Just keep moving the best you can. You'll get there.

[GUEJ]

That is amazing for you! I can't even imagine doing that much activity ever again. Well, I am going for water therapy soon, and I think that will make a world of difference. Moving in warm water loosens up the muscles and gives you a chance to move in a way you can't quite on land. I am doing some upper body stretches, and I definitely move, but no improvement yet. I am going to a rheumatologist in 2 weeks. They are concerned I have some type of auto-immune thing going on, or arthritis. Who knows....! I will keep posting with updates. I want to resolve this without surgery and major meds. I want my healthy body back! Thank you again for so much encouragement. I really needed it. This is a very positive forum. I have been on some otherwise depressing ones. This is the only one I visit now. I want to feel as if this situation is within my control. I hope you continue to make progress!

[Jackie]

Hi Erica
Glad you are being followed by good dr.s I hope the tramadol is easier on your system, it's supposed to be a good med specifically for back pain. let me know how the SI joint injections go, that should help to give an indication about the source of the pain. when I get my bone scan results back if there is SI joint inflammation on the scan I'm going to try it as well. I still have that nagging joint, hip, side of the leg pain in addition to the disc pain but better than it was. glad to hear Brenda that you are doing well and starting back to work. I'm starting back to work slowly but have a really good GP who is slowing me down as my job involves a lot of sitting. Erica, believe me, three months ago I thought this was it, the quality of my life was horrible. Everyday was a haze of pain and I would wake up at night completely drenched from the pain. It is really nice to connect with you as well as it is hard for friends who haven't had this kind of pain to understand, and being in so much pain is very isolating and depressing. You are totally going in the right direction though, as for me, I am getting better every week, still in pain but there are moments when it disappears for a few minutes and I'm sleeping well at night. I have flareups throughout the day and it is pretty much always there but it is becoming more often where it dissipates to a 2 for a period of time. hang in there, I do really hope you are getting better sleeps, my worst days are when I have a lousy sleep. keep in touch

[GUEJ]

Jackie
It's been so great having these back and forths. It's been awhile. From what I remember, you had the same symptoms I have. Did they ever "formally" diagnose you with Sac Joint Dysfunction? My preliminary blood work just came back all negative (no lyme, no lupus, no RA). I'm still seeing a rheumatologist in 2 weeks for a more extensive work-up, but this is an absolute mystery. I need to turn the corner towards healing. The more time I spend on my feet, the worse the pain gets. I don't mind a slow recover. I just need some signs of a "recovery". Maybe water therapy will be what turns it around for me (if I get it approved by insurance).
I have the SI injections on Tuesday, so I'll post and let you know how those went. It's really just for diagnostic purposes, but I'm running out of things to test here! In the meantime, I'm trying really hard to get a little pain management and better sleep. I just don't think my body stands a chance of healing without either one. I am so happy you are making progress. You give me hope!!! Stay in touch. I'll post next week again and as I have more info. Maybe our sagas will provide info. to others in similar circumstances.

[Jackie]

Hi Erica
yes I'd really like to know how the SI joint injections work out for you, hopefully you will get some significant relief! to answer your question I don't actually have a formal diagnosis of SI joint dysfunction, I think there is a test involving injections and imaging of the ligaments? The docs are more focussed on the disc problem. The SI joint pain was just obvious to the physiotherapist. I was so out of alignment my bra strap was slipping off my shoulder! you can tell by your pant legs if there is a misalignment. Is your SI joint tender when you press on it? my physio told me not to stand or walk much, only walk in the pool and just a bit of whip kick. I think you pursuing water therapy is the way to go. I'm really glad you tested negative for lupus, Lyme and RA, even though I know not having an answer is frustrating. keep me posted, hoping for an awesome sleep for you tonight

[GUEJ]

Thanks Jackie. I'm not convinced it's SI joint dysfunction only because the main pain I've had all along is deep in my right groin/hip/outer thigh area. I keep thinking it's some type of nerve issue, but not necessarily pinched leaving the spine. Who knows. I am so done trying to diagnose myself. I have symptoms that fit so many different disorders. I'm just trying to get to the right doctor to figure this out. This cannot be that unique of an issue.

I'm only taking valium to sleep at night. It knocks me right out. For the past 3-4 nights, I wake up after the 4 hour valium wears off, and then I've been able to get back to sleep for 1-2 hour spurts. Not terrible. If I take any sleep medication (Ambien/Tylenol PM) on top of the Valium, I"m in a complete coma the next day. It's awful. Were you having trouble sleeping at the height of your problem, and if so, what did you do? My problem is that both sides of my hips hurt, so side sleeping is painful, and my entire back feels swollen, so that's painful too. Sleeping on your stomach with back issues is out the question. I also wake up in extreme pain in the morning, which does get a little better after a few hours. I think you said you felt this too. Maybe it's just stiffness. Oh God...when will this turn the corner?