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Please help me understand what is happening to me.

Hello, 

This forum is my last option, because nowhere I turn I find answers. 

I’m a 44 years old woman, and I have been on long term steroids for Lupus. 17 years of Prednisone with average dosage 10mgs per day. Of course I have Osteoporosis, but it hasn’t been an issue yet. 

In November 2017 I was diagnosed with Lymphoma and immediatedly started a chemo treatment that was quite strong. The fatigue was horrible and I spent the next few months sitting on a recliner. And sleeping on it too. November and December I was too tired to do anything and spent them starting at a wall or trying to focus enough to read a few pages of a book. 

On Jan 2, I had to get dressed to go to the hospital and as I pulled on one of my UGG boot, I felt fireworks across my lower back. Got locked in place and fell backwards. 

Fortunately I was already low to the ground but the scare was big. 

Long story short I had lower back pain for two weeks. And then it went away. 

A few days later, I try to push my daughter away from the edge of the bed as she was about to fall. Well I put my hands under her body and when I pull I hear it again in my lower back. It almost takes the strength out of my knees. Another week of dull pain to deal with. 

By now I’m more careful, I use a cane, I walk slowly. I’m still doing chemo and that on top of that it’s just so horrible. But I keep going. Nurture the pain. Try to rest but also to move my body a little more. 

Next I go to the hospital for another chemo treatment which involves me going to the bathroom every hour and in a rush. One of these bathroom runs I quickly try to sit on the toilet but stop mid way as my back cracks again. I call for help and they get me to bed. 

When I go home from that hospital stay I try to go up the stairs to the bathroom but now instead of just pain, I start to get spasms. Bad ones. I scream from the pain. Long story short I almost passed out in the bathroom as I was sitting on the toilet fortunately I had my husband take me immediately to bed and I felt better. But I did some research and decided to give myself bed rest for a few days. Everytime I moved my back spasmed. It was horrible. I had a bathroom next to the bed and even that was hard to get to. 

I asked my husband to buy me diapers. I couldn’t deal with the pain. 

After reading some more I decided to take a Motrin (not advisable when doing chemo). I was desperate. 

The Motrin helped a lot. I walked again. I switched beds. 

Next stay at the hospital I hurt myself again going to the bathroom. I got spasms again. I called the nurse at 3am to help me up and as I got up the spasms were bad. I made it to the commode but when I sat down the back didn’t like it so the spasms got worse. Just like I told my husband, I asked this nurse to quickly put me back in bed but she didn’t. I think she was waiting for me to stop hurting. I didn’t and I passed out from the pain. 

They ran all checks on me but I was fine. Heart fine. 

I stayed in the hospital in diapers and only moving with slow movements to avoid triggering a spasm. 

Back home I was allowed to take Motrin and felt better. I changed bed and slept on a hard mattress. Woke up with spasm. Took a Motrin felt better. 

Moved back to the recliner  

Started doing gentle stretches and they seemed to work. I stopped the Motrin but I still walked slow and carefully. Not running anywhere. 

This past Friday I had my last chemo. Saturday morning I’m sleeping on the recliner and as I wake up I unintentionally stretch, like anybody streches in the morning. But I hear a POP this time mid spine and then pain that radiates both sides around my back. 

Of course by now I’m cursing. But I take a Motrin and hope for the best. Again slow walking. Not even stretches. 

Today I get up to pee, make my 3 feet journey to the commode and decided to change pants. As I put one leg in the pant I’m already worried, but it works. As I put the second leg in, which required me to lift it a bit more than the first leg, I hear my back talking to me again, with a pop on the lower left side. I go down to the floor to assess the damage. No spasms but pain. I slowly make it back to the recliner and sit down. Trying not to let it bring me down. 

I have had an MRI and found very little. Minor relatively acute superior endplate depressions at L1 and L3. Minor edema within these endplates suggests acuity. No canal stenosis. No foraminal encroachement. Alignment is satisfactory. Lumbar vertebral bodies are normal in stature. 

I am sure the lack of movement plus the chemo and the osteoporosis and the suppressed immuno system are all contributing factors. But I can’t really find on my lymphoma board nobody with the same repetitive problem and so I can’t get any tips or ideas or even a name for what is happening to me. And if this is somewhat normal. 

So you guys are my last resource. If you don’t know, nobody knows. Do you have any idea why my back is doing this? And will it get better with time, after the chemo is out of my system and I start physical therapy? 

Is it normal to throw out your back all the time like this? 

Thank you so much for any piece of information that can help me figure out what is going on and what I can do to make it better. 

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Comments

  • Wow so very sorry to hear all you’re going through.

    Awful!!

    Have you taken your MRI to a spine specialist like a neurologist?

    That’s where I would start. 

    My neurologist was more interested in him carefully examining my MRI than looking at the radiology report. 

    Radiologists can and do miss things that neurologists may discover on your MRI.

    Good luck. Please keep us posted.

  • hi lymplupus

    welcome to spine-health

    so sorry to hear how much you are having to cope with on top of chemo.

    one positive here is your mri does not seem to show any disc herniations but you are clearly in a lot of pain.

    if a spine specialist has not seen your mri it might be helpful to do that next.

    i have added two links below to help new members with information and these also contain the forum rules.  there is lots of material to research that will give you the power of knowledge.

    welcome to spine health


    aj 


    AJGormit

    ---------------------------------------------------------------

    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015
    L4-S1 TLIF with decompression June 2017
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  • It just happened again. I’m stuck on the couch. I hate this. What to do for spasms?

  • Lymplupus it's possible the lack of exercise over the last couple of months has caused your back muscles surrounding your spine to become so weak they are not supporting your spine correctly. That recliner of yours may feel good and I understand why it's been your favorite spot for the last couple of months but it's not always your friend when it comes to your back. I think the sooner you get into pt the better i hope it's nothing more than just strengthening up your back it sounds like you've had a rough couple of months. Take care.

  • Lymplupus what has helped me in the past was those resistance bands when I really can't do much I use them to help me keep some tone and strength in different parts of the body so I don't turn into a bowl of jello. I have the ones with the handles which you can get in different strengths ask your pt about them they may help. They are a very mild resistance and something you can do at home.

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  • Oh how sorry I am for your troubles! I'm not sure if you are experiencing the problem I have, but I'd like to tell you my experience. I was starting to have pain just like you described. Then after a while, I started locking in these horrible positions with spasms. I went to a pain specialist, who did a diagnostic test. It was injections of lidocaine and steroids of the little joints around the spine called facet joints. He focused on L5 -SI. I had honestly never heard of these joints. Sure enough, I started getting relief after a few days. When returning to him, I told him I had found some relief. Not better, but relief. He then did a nerve ablation around these facet joints. It is a longer, lasting form of relief. The nerves will eventually mend back and the pain returns. I went almost one year and a half the first time without intense spasms and locking up. The second time was about the same. I recently had it done again and have gotten better results than the other two. Don't give up hope. Look how far you've already come. BTW..my MRI did not show up anything regarding the facet joints. It is a trial test. I do most definitely have arthritis around the facet joints all up and down my back. I also have thinning of the bones. I'm 65. 

  • I'd like to add also it is very important to apply heat to the muscles and ice to the bone. Alternate or get a warm moist heating pad. The best to you!! 


  • Thank you all for your replies. The spasms started on Monday and now is Friday and I still haven’t set foot on the floor. 

    Well, actually on Wednesday we managed to move me from the couch to my recliner. To tell you that I crawled three feet and it took me 20 minutes, getting a little spasm every step. 

    I had taken Motrin so the pain was a little dulled. 

    But when I got to the recliner I started spasming a lot because the back did not want to be in a seated position. 

    So during one of my spasm I pushed back and the recliner went almost flat. Ok. Comfort again. 

    I have been using a heating pad 20 minutes on and off and pretty much rested the back. 

    Today we tried to raise the recliner to an almost seated position again and I am now writing this as I fear the spasms coming back. So far so good, but I can feel the back muscles on my left side talking to me, crawling up and down, and I don’t know if I should ignore them and try to stay as still as I can, or if I should try some delicate stretching. I’m so afraid it’s ridiculous  

    My theory is that the chemo has weakened everything in my body and possibly depleted me of important mineral and vitamins  and now I need to slowly rebuild everything. 

    Pt will happen soon, as soon as I can get up again  

    Thanks again and I will get those bands because I’m trying to exercise as best as I can while stuck here  


  • martymarmmartymar Posts: 98
    edited 03/23/2018 - 8:18 PM

    I hope you can get some relief soon I've had family members go through chemo and they drank Gatorade it helped them stay hydrated And gave the body an extra boost it may help. Take care

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