Bad Low Back Pain - Advice Please

Hello To All:

My name is Barbara and I am a regular in the Lupus forum. I have been lurking here for sometime now, and I know everyone is so helpful and supportive .

I will try to keep the post as short as possible. First some background info. I am 47 and have been dealing with a lot of chronic health issues. I have had Lupus for 25 years now, but my Dr's did not start treating me for it until June 2001. I also have RA, Fibro, Gastroparsis, Pulmonary Hypertension, reoccurring Pleursiy and Pericarditis, Blood clots in my IVC and SVC, DDD in my lower back, severe osteoporosis, and MDS (Myelodysplastic Syndrome) the type I have is RAEB Type 2. I have been on steroids continually for 12 1/2 years. I have all sorts of other "issues" that come with taking steroids for so long. I have never been below 10mg a day on them and I have been as high as 125mg a day. Due to my Lupus and MDS I have difficulty keeping my blood counts up and since 2004 I have had about 70 units of blood and 2 units of platelets. Just recently had a blood transfusion on August 24th.

My lower back has been causing me terrible problems and pain for the past 3 years I would say. I really started sliding down the slippery slope 2 years ago, and I am holding on barely with my finger tips. Now onto my question, I recently had an MRI done. The report shows from L1 to L5 shows no significant spondyloarthropathy. Then it says L5 - S1 " There is disk desiccation with severe right facet joint hypertrophy and moderate left facet joint hypertrophy. The central canal, lateral recesses,and neural foramina are patent, the visualized para spinal soft tissues are normal in appearance. "Impression left degenerative facet hypertrophy at L5 - S1.

My Pcp basically told me that this is something that can not be surgically fixed. I still am kinda hazy about what it all means. Can any of you explain to me in simple terms what it mean's. When I get up in the morning my lower back hurts around I'd say a 4, but by noon my pain is up around an 6 and my back burns in the muscle like a little man is in there with a lighter lit and burning me.
My left side always hurts worse than the right and it seems to wrap around my hip and down part of my thigh.

I am currently on Methadone for my long acting med and dilaudid for my break through pain. I have tried ice, heat, stretching, PT, water therapy, TENS unit, massage, acupuncture , SI joint injections, injections in the bursa of left hip, RFA, ultrasound of back and hip area, biofeedback, meditation.

As I said earlier I am currently on 35mg of steroids a day, I take 15mg of methadone, and I use up to 5 (2mg) dilaudid tabs on really bad days when my pain is up to an 8, thata happens about 4-5 times a week and on a normal day I may only take one or none that day. I am allowed 6 dilaudid per day as needed. I am also on cymblata at 30mg per day, I am on soma 4 times per day, I also take plaquenil and methotrexate for my Lupus and RA. I will note that I am so immuno suppressed i have ZERO "B" cells and only have 5 "T" cells. My Dr's are uncertain as to why it's so bad. I am currently waiting to be seen by Infectious Disease Doc's at the National Institute of Health. I receive my care at the military's major medical center in Bethesda Maryland, and this is the home of the US military's medical. I see students, residents, staff Doc and Professor's. My soma does not have narcotic medication in them. My pain was much much better when I was on 30mg of the methadone a day. However, my QT interval was extended and that can potentially cause death. So they cut my dose in half. I find I am taking more dilaudid to fill in the gap. I have tried most of the other narcotics with little success except demoral, but my tolerance became very high and they switched me to OxyContin , which I didn't handle to well

My back started to have spasms as of last night, it hits so hard it takes my breath away, it usually last anywhere from 2-4 mins or so. Heat, massage, and stretching seem to be the only things that seem to help and with that it doesn't last long. I do exercise, I do pulmonary rehab 3 times a week and get massages every 16 days.
I take a total of 23 different medications orally per day, plus weekly shot, and then pain meds on top. I am also on oxygen 24/7 and have both regular sleep apena and central sleep apena, so I use a VPAP whenever I sleep. I'm sorry this was so long, can anyone offer some suggestions, and describe my MRI results in a clearer detail? I know you all aren't Dr's but I was hoping for some kind of input. Right now my pain is at a solid 8. Any help would be greatly appreciated. If you have any questions, I will be happy to answer them. Thanks in advance.

Hugs, Barbarat

Hi SE:

Thanks for the welcome, I appreciate it. Well I saw my cardiologist yesterday. I currently have a small amount of fluid around my heart and have a severe case of pericarditis, there isn't a pericardial effusion at this time. Of course, this causes me serious chest pain when I breath deeply and lay flat. They started me on two different medications and I just need to give the medication time to work, so he says.

I have just about every type of specialist there is. I am lucky they all talk to each other via email. My PCP kinda is the main glue and keep things up to date. I emailed her work and home email addy's letting her know how badly I feel tonight. Hubby placed my lidocaine patches on my lower back and I've taken my BT meds.

I was just hoping someone had some other ideas on my back issues. As far as my "other issues" my Dr's are trying. Because of the type of MDS I have it's very hard to treat as it was caused from me taking a potent chemo drug called Cytoxan to treat my Lupus. Because of my Lupus and RA I am currently on a mild form of chemotherapy in a shot. I am awaiting to try the new medication Benylsta that was approved just recently by the FDA for Lupus, it's the first in 50 years. That being said, not a lot is known about long term side affects. It also has some other serious side affects when receiving the drug and while taking it. My MDS according to my last bone marrow biopsy shows it's changing. Right now I take my chemo shot weekly it pulls my counts down, then I need a blood transfusion the counts come up then need to take shot again, you get the picture.

I guess you could say I am a very sick person. I missed my daughter's high school graduation June of 2011. She found me unresponsive and I ended up on a vent in the ICU for 5 days. Since then I have had 4 more events. My cardiologist had an implantable cardiac monitor put in my chest. Between all my Dr's they are uncertain, if it's my heart, lungs, or central sleep apena. My poor husband is constantly worried. Saturday I got up at 11:30 am went back to bed at 2 pm and slept until 7:45 pm.

SE I have to say, I feel as if I'm at my wits end. My back is killing me as well as the pericarditis. I need some relief and just don't know what to do. I'm sorry I rambled and vented, I just feel like I should just be "put down" like they do with animals that are so very sick. Thanks for listening and I hope some others can come along and maybe offer some tricks I've not tried yet. I guess I just wanted to talk with you folks cause you understand severe chronic pain issues.

I know from reading the forum, you are having a hard time yourself, I just wanted to wish you better days and less pain.

Hugs, Barbara

Post Edited (Barbara Lee) : 9/5/2012 10:55:26 PM (GMT-6)

Barbara Lee,

I also have 3 buldging discs that cannot be operated on. I have arthritis in the spine, keen boch disease in the wrist (had 3 bones removed) artery disease, stents in the groin area, PAD, COPD,High Blood Pressure, high colesterol and now Vitamin B12 definciency, firbromyalgia and neuropathy only to name the most important. I just turned 60 and I am at the end of my rope daily. I take care of my 80 year old mom and my sister was just diagnosed with brain cancer so her and her husband are moving in with me. I have 11 rooms. I guess we all have to help each other.

Reading your post I really can recognize myself with you. Hang in there and if you need to talk just come right to our site it is a great place with alot of great people.

If I spelled anything wrong I am sorry because it is almost ;6:00 in the morning and I am tired.
Good luck.


Jazzie

Hi Barbara and welcome to the chronic pain forum. I can help you out a little with the MRI, as I have the same problem with my facet joints at L5/S1 which is the bottom level. Disc dessication means the the gel like substance inside the disc is drying out and this is something that can happen with the normal aging process, which will cause pain especially when the disc dries out, spurs can form too later on. The facet joint hypertrophy means the facet joint has become larger, because this is usually caused by osteoarthritis which strikes our larger joints. The good news is you do not have any bulging or herniated disc with this mix, I do have a herniated disc at this level and had surgery offered years ago because of the herniation and I declined. I now think I really messed up when I made that decision. I thought working was more important than taking off one year to recover from surgery, which is what my dr offered. Rarely would they do surgery on you at this point.

I see you have tried everything coming down the pike in a effort to lower your pain.The one thing I will mention is I see you are on 2mg of Dilaudid and that is a very mild dose. When they tried me on that dose it did nothing for my pain, in fact Tylenol or Ibuprophen helped more than that did. You would probably fare much better if your dr would bump you up to 4mg, I am now on 8mg. for BT pain, I have a pain pump. When I went from 2mg to 4mg, it made a huge difference in my pain.

Have you had a Bone Density test done, with you on prolonged use of steroids you can get osteoporosis induced by the steroids this happened to me. If you have not been checked, please get your PCP to order one.

To better understand your back situation, please go to SpineUniverse.com and read up on your back problems, it is a user friendly site. There are a lot of different web sites out there but this is one that has factual info not a site that others can add to it. Check it out and see what you think.

You certainly have a lot on your plate in the health department and I sure hope you can catch a break here. Take care...Susie

Hi Barbra and Welcome to our Chronic Pain Forum, I must tell you that by reading your post I am amazed at all you are going through! I can only imagine how difficult it all must be for you! I will tell you, when your feeling really frustrated, and alone, and need to vent an need an sympathic and empathic ear to listen to you. Please do not hesitate to come here, vent all you want ( you definitely have a right to do that with every thing your going through!) we will listen and be here for you and give you what support we can! May I ask have you tried propping yourself up on pillows to try and ease the pain when you sleep, or sleep on your side with a body pillow, I noticed that you have complex sleep apnea, I also have that, and I use the VPAP adapt SV machine I have one of those car neck pillows that I use when I sleep on my side, I put the open end of the pillow where my face and mask are and use the "C" part of the pillow to support the top and back of my head. It is allot cheaper than getting one of those CPAP pillows. I have problems with my entire back and I can not sleep laying flat on my back so I have an adjustable bed and I have in a reclining type position, and I sleep that way, for many years I slept in a recliner because of my back. Have you tried that  by any chance?

 

I do hope you continue to post, we are kind of like family here, and I hope you become apart of our family. I wish you all the best!

 

White Beard

Hi Barabra, Hugs to you also.

I am fairly new to the boards here in the Chronic Pain. Yes, its called chronic pain for a reason, and that is we are all suffering here. I have had 3 back surgeries in the past, being operated on my L5-S1 area, yes stats a bad area girl, thats the area right above the tail bone, and when it aches, it takes everything out of you. I see that you do have some other illnesses and I know the last thing that you need is back problems. As the Moderator has stated, I too believe that this is a degenerative disk that does go along with age, but in my case, I had mine injured at my job, now its cause me nerve damage in my legs. I do hope that your PM are able to remedy this for you. Don't hesitate to let us know.

Lynn
3/2008, Failed back surgery Laminectomy fusion L4-L5
7/2008--Revision of hardware
11/2011, SCS implant
3/2012-Laminectomy Fusion with new hardware and cage
Permanent nerve damage in both legs
Failure of SCS implant

Currently on
150'mg Lyrica 4xdaily
10/325 Percocet
80mg Morphine
8mg Timazidine muscle relaxer
20 mg Lexapro
10 ng ambien
Vitamin D
Spinal Cord Stimulator

Oh Barbara

I honestly don't know what to say, I think everyone else has said how I feel. I am so so sorry you are faced with all this. You certainly seem one sick person. One thing is hard enough to deal with but when you are face with everything like you are it just gets too much and I can understand why you feel like that. Living with chronic pain is life altering in itself. It just robs you of life as you knew it.

I am sure you hubby is more than happy to be helping you. Yes, he may get fed up at times but I am sure he wouldn't have it any other way. My DH has looked after me this year after two lots of back surgery. He has been amazing, as has my daughter. They are my rocks. We have been married 35 years. Remember the 'in sickness and in health vows'!!!!!!!

I had a little chuckle when you said your hubby puts your earrings in, now that is something mine would not do. Makes me laugh with us women, we have all these issues going on but we have to look good!!

Please make sure you use us here for support, we all know what it's like to suffer pain, even if we can't offer advice. I do hope that your doctors can find answers for you soon. The main thing is that they are trying. Would it be possible to get opinions from non military doctors or is that a no no in the military. Is you hubby based at home now or could he still be on active duty? You would struggle if he wasn't around.

Take care Barbara, sorry there is nothing more constructive I could offer, but please know I will be thinking about you.

Jane

Afternoon all:

Thanks for your kind words, I can honestly say it helps to vent to people who understand what it's like to live with a chronic illness.

Randy I appreciate your prayers. I know we have had some in depth conversations in the chat rooms. I honestly don't expect anyone to have any "new" advice on the medical front. Again, however, it's nice to blow off some steam and know that my feelings are understood and they don't take them personally. My hubby will listen but he gets frustrated cause he can't fix the problem.

Jane DH and I have been married almost 28 years, and he takes his vowes very seriously as do I. Congrats on being married so long. Now days people are able to throw up their hands and quit easier and that's a shame. I know my hubby doesn't mind caring for me I just feel guilty that I can't do it on my own.

My hubby retired in 2007 he did over 21 years and was in several combat situations. They wanted to send him back to Iraq, which he'd been there before, and that's about the time my health started to really decline. So he opted to retire and he was lucky to get a job doing basically the exact same thing he did while in the military except he doesn't go anywhere dangerous anymore. We are blessed that he made it through his tours in Afghanistan and
Iraq without being physically injured. I see so many wounded young men that are missing their legs or legs and an arm. I saw a young man yesterday at the hospital and he was missing all his limbs. He just had a torso and a head, very very heart breaking.

Anyway, I have made it thru most of the day. I slept in late, as I couldn't sleep last night. I even now managed to come out and sit in the front lawn and enjoy the fresh air. Please continue to keep me in your thoughts I really need the support. Thank you for your support and I hope each one of you have as pain free of a day or night as you can.

Hugs,
Barbara

Hi all:

Well my back pain is through the roof. I spent the majority of the weekend in bed. I began running a temp of 102.6 on Thursday night, fever finally broke early this morning. However, not only is my back hurting like crazy, I'm congested, have burning lungs, and am in dire need of two units of blood again.

I have an appointment to see my PCP on Wednesday and then my cardiologist. I won't be surprised if I don't end up in the hospital. With me having ZERO immune system I can barely fight anything off. It's looking like I'm gonna need another bone marrow biopsy soon.

I did get my referral approved to see a civilian pain management Dr for them to look and see if an injection would help with my SI joint issues. My oral pain meds are prescribed by my US Naval doctor that I have. She was in contact with the military docs for pain management, they just couldn't see me with all the wounded soldiers.

Any suggestions on how to stop the burning in my low back would be appreciated.

Hugs, Barbara

Hi Everyone,

Thanks so much for all your support. I am struggling so bad, it's nice to let my feelings out to people who understand. Today, has been a long one for me. I had two Dr appointments today.

Talked my my PCP about increasing my methadone but she wants to wait and speak with the Dr at the Military Medical School about it. He's the expert on the drug, so NO pain relief for the back at this time.

I also was told the bug I have is a tough one. She had had it and it took two weeks for her to get over it. She has a working immune system and I don't have an immune system. So she said she wouldn't be surprised if it took 21-30 days for me to get better. So I guess I just lay and wait.

I have to make some serious decisions about some of the drugs I take and I am not sure which way to go. Found out yesterday my daughter, who has a DX of Asperbergers syndrome ( said Autisim when she was little changed the DX as she got older) she's afraid to be left alone with me as sick as I am right now. DH family is wanting to get together for Thanksgiving, I can't travel 12 hrs in the car so I thought daughter and I would stay home and DH could go to his parents.

Daughter is scared to be with me, if I'm still like I am now. DH said to remember that on June 5, 2011, she found me unresponsive and was literally dying in front of her eyes. She did call 911, but couldn't talk to them. DH had to do it, I feel so so guilty, I just don't know what to do. How do you all deal with the feelings of feeling like you're a burden? I feel lost and all alone. Any suggestions would be most appreciated. Guess I will go and try to sleep. Sleep well my HW family may you all have less pain and sleep well tonight.

Hugs,
Barbara

Hi Matt:

My daughter will be 20 in February. She left for college back in August. She's a sophomore this year. She has a new roommate that she seems to get along with. My daughter is very bright, but she suffers with severe anxiety issues that effect her day to day life.

She also, has issues socially, and spends a great deal of her time alone. Which then makes her realize how different she is from everyone else. With me being so ill and her finding me with one whole step into deaths doorway, she has huges issues about me dying. It's a tough spot to be in, we don't want hide things from her and yet I want to protect her. She has admitted she is currently afraid to be left alone with me over Thanksgiving if I am in the shape I am in now.

Any advice would be gladly accepted. I want her to have the fullest and best life possible. She's come so far from when she was first Dx'd with Autisim. Hope you are feeling better today Matt and please continue to rest nd let your body heal.

Hugs,
Barbara

Oh No Matt:

This is terrible news, don't worry about getting back to me right now. We can as discuss Asperbergers anytime. You need to focus on getting better. I think I read that you are at your Mom's? I sure hope so that you can have some help.

Please when you are feeling up to it, let us know how you are doing. I hope they get your medication adjustments done ASAP! You will be in my prayers.

Hugs,
Barbara

Barbara,

You and I go back a long long way and I am praying hard for you my dear dear friend.  You hang in there and keep your faith.  You have many friends here on healing well and you will get through.  You are the strongest woman I know and I will step up the prayers for you for the difficulties you have been facing lately. 

God bless you and your family and don't feel guilty.  You are a good mother and wife.  AND  you are a terrific friend!!!

Linda

PS  Keep posting!!  This forum needs you as much as you need it.