ANCY

Osteomyelitis & Pain Management With dysautonomia

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Hello to all and thank you for reading.

Over the last couple weeks I have been dealing with back and hip pain which landed me in the ER last Sunday. They did a CT of the lumbar spine and found inflamation/infection on the anterior portion of the L5 vertebrae and surrounding tissues but no pockets of fluid they could biopsy. With this information the ER dr decided to transfer me to their sister hospital where there are better neurosurgeons. I was admitted to ICU because they were concerned about spinal chord involvement. Since I am having new bladder issues as well as significant weakness in the left leg, which I can barely feel right now, however we never got an answer about those.

Infectious disease has decided not to treat at this time because he would be treating blind and also this would require a PICC, historically piccs are bad news for me. He is highly suspect that it was seeded during one of the last 2 blood infections, possibly MRSA from December or Psudomonus from February. He said he could treat for both but that would pose a high risk for organ damage. If he treats one and we were wrong than it could make the bacteria more resistant. He's been trying to catch it with blood cultures but not to  hopeful since the last 6 were negative. 

Came home Saturday from the hospital since basically we are just waiting for the infection to get worse to the point they can do a biopsy, and because the MRI made it clear that there's no spinal chord involvment. there is hoping it just resolves on its own but not likely with how things are going. He will repeat the MRI in a month unless more infection symptoms develop, then he'll order it sooner.

Obviously there is more limited choices for pain control out of the hospital and mine are more limited because of allergies. What I was sent home with does ok some of the time but getting a lot of break through pain and then end up chasing it...

Does anyone have ideas for dealing with pain, other than drugs, especially back pain? 

Do people with Dysautonomia have a harder time with pain control? 

Thanks so much for reading, and replying.

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Things I do to help my chronic pain issues are: ice, heat, TENS unit because I tense my muscles in reaction to joint pain and then end up with referred pain, warm Epsom salt bathes, and I take a tumeric and ginger supplement. 

I hope they get this figured out for you soon. 

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Hi ANCY!  So sorry to hear that you are feeling so bad again!  What a rough year, huh!  I do feel that people with dysautonomia handle pain differently, and just in the experience of my family, feel that they are harder to treat for pain.  Heat works for my daughter - warm rice socks.  A clean sock, fill with rice, stick in microwave - you get the picture.  For my mom, though, ice.  Never goes anywhere without her ice.  Those sheets of fake ice cubes from Walgreens or CVS. Those are great because you can leave them in the sheet and they freeze flat or whatever way you shape them. 

Please take care, I'll keep praying!

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Katybug - thank you for all the ideas! Can't do the tens with my pacemaker but I think I will try the others. Have been doing heat but haven't tried ice. Thanks! 

Dizzygirls - thanks for praying, it has been a rough couple of months for sure by God's grace I've made it through this far. We do the same thing with rice and socks. We use my dad's old military socks, some of which are a little thread bare on the heals. Then I end up leaving a trail of rice lol! I use kryogenic ice packs, nice because they stay cold longer.

Just another question... they have me using a fentynal patch that is helpful for about 36 supposed to be 72. Ideas? Waiting to hear back from my dr, the home care nurse called to see if they would change the order so we can change it more frequently.  

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Hi ANCY,

I just wanted to to tell you how sorry I am at all you've been through and are continuing to go through. What a frightful situation to be sure. The only additional thing I can think to suggest trying are the Lidocaine 5 % prescription patches which I find immensely helpful for my back pain.  I'll be praying for you my friend.

 

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Psalm 23- thanks! I'll look into the lidocaine patches,  I have used them in the past, just not whIle also using fentynal patches. Sorry you have to deal with back pain.

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Ancy, some pain meds may not work for some. Morphine is like giving me water. I have to use Demoral along with Zofran for major surgeries. For not so major - Tramadol with Bentyl  works. Sometimes have to figure out which receptors we need to tweak for our pain. As for natural things - turmeric and ginger. Frankincense and myrrh very helpful. Also kills some bacterias, protozoa etc. All can potentially cause a die off affect (herx).

Heat is better for me, rather than cold. Big heating pad, is my friend. Lying here with one on my neck. 

Issie

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Thanks Issue I totally get the morphine like water, I have some like that...

Do you use essential oils or a tea for those?

Heat seems to be helping more than ice today at least. 

Hope your neck feels better qiickly.

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So just found out infectious disease thinks it will take 2-3 months to  repeat scans and be able to start treating the infection... unless i get sepsis... so I was wondering if ANY ONE has any more ideas for long term, I certainly don't want to be taking narcotics that long! Also anyone deal with bladder retention? Infectious disease is saying it's my dysautonomia not my back so maybe a more permanent issue... 

Thanks! Amber

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I'm using the oils, but do have teas too. 

Hope you can find something that helps. 

I used fresh parsley  heated in water, boil until green - drink water - got rid of urinary infection no medicine helped. I did have to have a bladder suspension.  But I have EDS.  

Issie

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Thanks Issie what is a bladder suspension? They are talking about putting a foley in for a temporary  solution. the Geneticists we saw didn't want to label EDS but he told us if we went to another Geneticists they would say EDS.

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Hi ANCY!

You know that my daughter's been dealing with catheters as of late, too, and she has had a Foley twice.  They are super easy and not too uncomfortable.  The problem is, though, that my daughter's body doesn't like anything foreign, so the catheter quickly irritated her, got plugged up, and had to be removed by day 2.  Straight cathing seems to be pretty simple and it's less irritating than the 'leave in' kind.  Doesn't plug up either.  If you end up with a Foley for a short stint, my daughter had a lot of little suggestions that might help.  Just DM me!

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ANCY--just want to say I am so sorry for all you are dealing with right now.  I hope you can be comfortable and that this gets resolved soon.

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14 hours ago, ANCY said:

Thanks Issie what is a bladder suspension? They are talking about putting a foley in for a temporary  solution. the Geneticists we saw didn't want to label EDS but he told us if we went to another Geneticists they would say EDS.

My bladder had dropped and they pull it back up and staple it in place. Seldom got infections after that. 

Are you not able to hold your urine or can't release it?  If it's a spasm and can't release - muscle relaxers help.  If it's you can't retain or hold - may be bladder drop or possibly the uterus has dropped pressing on bladder. (This was my case - it was EDS related.)

Issie

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Dizzy Girls- thank you for sharing your daughter's experience! 

Mom to Giulana- thank you for the well wishes!

Issie- thank you so much for all that information! Reminds me some of my mom's problems too. Sorry you had to go through all that. My issue is inability to pee... I was able to get in with my PCP Thursday and he wrote orders to straight cath, he believes that to be less risky than putting a foley in. Yesterday went 17 hours without urinating and by the time the nurse got here my bladder was very full and felt like I was having period cramps. I have been on flexoral for the back pain.

My PCP is also putting in for me to see a neurosurgeon because of so many neuro like symptoms with bladder and bowel troubles as well as weekness in my legs and loss of feeling below my knees.

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Ancy I am sorry to hear you are having a bad time again, my thoughts are with you and I hope you get some relief from the pain soon xxx

 

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In the hospital again, should see a pain dr today to find a regimen that works for pain control. Once again MRI shows nothing that they can biopsy, although now there is involvement of L4 and L5. 

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Oh ancy, so sorry to hear this.  Like DG said your always in our thoughts. I hope they can find a combo of meds to help with the pain until this all gets figures out.  Have you seen the neurosurgeon yet? I feel terrible your having to go through all this. :(

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On 3/13/2017 at 0:55 AM, issie said:

As for natural things - turmeric and ginger. Frankincense and myrrh very helpful. Also kills some bacterias, protozoa etc. All can potentially cause a die off affect (herx).

 

Issue, please say more about using frankincense. I have plenty but have no knowledge about using it for pain relief.

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37 minutes ago, Nlightenup said:

Issue, please say more about using frankincense. I have plenty but have no knowledge about using it for pain relief.

Rather than my telling you what I have experienced in its help, may be better to Google it and see what docs have written about its use and why it works.  Lots of links there. 

Issie

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Thank you all for your compassion. I have not seen a neurosurgeon however I've been seeing a different infectious disease dr in the hospital who has a harder time just leaving me to get worse. In her opinion better to identify now for easier treatment, my aunt has been dealing with osteomyelitis for months so can be a long road... they are also wondering if somehow I have a compression fracture. Anyway... she asked the Radiologists to put their heads together and see if they could come up with a way to do the biopsy. They came up with a way to do it under CT guidance and got it done yesterday. Will not have results for another 4-5 days but since the antibiotics can be done outpatient they don't have to keep me till then. Supposed to get the foley out this morning and most likely will send me home today as long as the pain management I'm on continues to work.

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Update:

The biopsy did not grow anything but did show inflamation. ID drs got together and discussed my case and came to an agreement on what they think happened. They believe the blood infection in December seeded the osteomyelitis and it was either fully treated, or partially treated by the antibiotics that were used to treat the blood infection in February. So the plan has been to wait and rescan every 6-8 weeks to see weather things are getting worse or improving. Forecasting several more months of pain and inflamation of the bone, maybe even a year. Will have another MRI Tuesday and depending on that maybe a biopsy if necessary. Because of my history they will not treat unless they know exactly which germ they are treating. 

Because of the duration of pain my PCP decided it would be best to get a pain management dr involved.  He has switched me to diffrent meds which have been more effective but it would seem that they are having an unusual effect on my blood pressure. Has anyone ever had high blood pressure from moraphine or tizanidine? (My normal, with midodrine and florinef, is about 110/60, now running around 140/95 without taking the midodrine.) will see cardiologist on Tuesday but was wondering if anyone else has experienced this?

Thanks for reading and replying!

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