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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 2/17/2012 9:07 PM (GMT -6)   
I haven't been posting much - so first apologies to all of you. I hope you all know I'm still thinking of you as ever :-)

Me - things aren't good. I know that there are a lot of people worse off than me, but if I was the superstitious sort, I'd say there was some malevolent little being out there laughing its socks off as it pours more and more mess onto my plate. I need to vent, and I hope you'll bear with me.

I've got 'something' going on - been getting fevers almost every evening for the last few months, major fatigue, joint pain. Sometimes a rash. I've had four pretty decent infections in about two months - UTI, probable meningitis, gastro... now I've got cellulitis again. I had blood tests when I had the UTI - and of course lots with 'meningitis' - all the inflammatory stuff was up with those, the rest of the time it's normal.

My back pain isn't abating - still can't figure out what's going on there either. It's a month until I see the surgeon - so hopefully at least he'll be able to do something for my upper back - but without knowing exactly what is going on with my low back, other than disc bulges that don't actually seem to be touching anything, there's not much my doctors can do.

And then of course the CRPS. I saw my PM yesterday, and all he can offer me is another ketamine infusion. I've accepted - mainly because I don't have much choice, but ket has only been of marginal help in the past and always comes with a bag of side effects. I've done all the nerve pain meds, been through the opiates and the cocktail now is the best I we've been able to get. He doesn't feel that adding any other meds to my pump is an option, my SCS isn't working properly because of the irritated tissues from my back injuries. He's consulted with his partner, with other docs, and got not further forward.

We spoke about surgery for my deformed feet - something I've been discussing with my physio for a while now. I expected his answer, but it was a blow to hear it - that in theory surgery could help but he feels I am so fragile I would likely end up much, much worse... assuming I could find a surgeon who would operate in the first place. This kills me, because they are a huge cause of my disability. If someone came to me tomorrow with that magic wand that would relieve all pain, I'd still be unable to walk because of the state of my feet.

The amount of opiate I'm needing to take just to put a dent in the pain scares me too - I'm up to 30mg Oxycontin 3x a day, plus IR oxycodone for breakthrough. When I take the Oxycontin, I get that initial kick of pain relief about 20-30 minutes after I take it. It's got to last 8 hours. It lasts 3 or 4 if I'm lucky. Yesterday, with my GP's okay, I had 25mg of IR to make the hour's car trip to my specialist. It knocked me silly for about 20 minutes, but barely touched the pain. Looks like I'm becoming tolerant, but we don't know what to do. There aren't many others I can handle, and those that I can, don't touch the pain. Just fed up with the whole situation I haven't slept more than 2 hours in 24 for about a month now, and my body won't stop burning. This sure isn't the life I envisaged for myself.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 2/17/2012 10:46 PM (GMT -6)   
Oh wow, I am SO sorry you are dealing with so much right now. It's just not fair that you have so much going on all at the same time. I really am sorry. I hope that you can find relief somehow. I will be keeping you in my thoughts and prayers. *hugs*
Current: DDD L4-S1, Arthritis L4-S1, Facet Syndrome, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. In past 6 months have had epidurals, facet blocks and radiofrequency ablation.
Past: Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome. 3 laparoscopies, 2 cystoscopies, total hysterectomy, appendix & gallbladder removal.

grandmaroses
Veteran Member


Date Joined Jan 2011
Total Posts : 1355
   Posted 2/17/2012 10:59 PM (GMT -6)   
Hi Laura, You are being so strong about everything that is happening. I wish for you there was a fairy who could swish her wand over you and you would be fixed.
You are amazing with all you are enduring still giving support to others. The only advise I can give you is what others have said to me keep you chin up it makes a better target. (((hugs)))
Take care
Rose



Insulin Dependant Diabetic, Fibromyalgia, Gerd, IBS, Sleep Apnea, COPD, Spondylolistesis, Diabetic Neuropathy, Fatty Liver, High Cholesterol

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 2/18/2012 6:02 AM (GMT -6)   
Oh Laura,
 
I had no idea how bad things had gotten for you.  I am so very sorry for your pain and for the things you are having to endure. 
 
Please vent away.  There isn't much any of us can do to help and everyone knows you do the right thing with the Dr's, but we can certainly listen and give you some support for a while!
 
All my best! 

(Please find the fever cause before you let them do anything invasive...you know that something is wrong if you are running a fever every night and haven't been able to find the cause...perhaps Mayo?)
 
Good luck with everything!

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 2/18/2012 11:17 PM (GMT -6)   
Laura, I am so sorry to hear how much you are struggling. I wish there was a magic wand I could wave to take your pain away - you have just suffered through so much.

I do hope they find the causes of the fevers - it definitely sounds like you have something infectious going on...and perhaps that is worsening the pain?

Are there clinics in Australia that specialize in treating the hardest cases? Something like the Mayo Clinic in the United States? When I read your posts, I always hope there's something they just haven't figured out yet that will bring you some relief.

(((gentle hugs)))
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/18/2012 11:58 PM (GMT -6)   
*hugs* to you all

Heather, RM - we don't really have the same sort of thing as you guys - certainly nothing like Mayo as far as I know. Infection - it's hard to tell. Throughout all this I've had the meningitis thing - was on central line antibiotics for that, also had blood cultures, etc., which were negative. I've had antibiotics to clear my UTIs - they've resolved. Antibiotics to deal with the cellulitis - also looks to be resolved. Except when I am obviously sick, I don't have any signs of an infection either - means that if it is infectious, my body isn't recognising or responding to it at all... which isn't a nice thought :(

I think I'm just so very tired of everything. I haven't slept in weeks - not more than a a couple of hours in 24 - and it's killing me. I think the pain makes things seem so much - exhaustion just makes things seem hopeless :(

Thanks for listening
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 2/19/2012 12:27 AM (GMT -6)   
Laura,

First, don't ever feel like you have to apologize.... We are the FIRST people in your life that understand. I'm just glad that you took a moment to share all that is really going on. I knew that you were going through a lot.... but it wasn't until reading it, that I truly can see a small portion of the HUGE amount you are dealing with. I feel so bad that you are suffering so much.

We have completely different health/pain issues - but there are two things that I identify w/ you in a BIG way. First, the sleep deprivation. When you go through days - and then weeks - without sleep, it just makes everything worse. The pain, depression, your outlook on everything, etc. I know you've been through the gamut of meds and all... but have you tried things for sleep? I'm sorry if we've talked about this before; my memory is pretty bad these days (probably due to my own sleep deprivation!).

Second, I know exactly what it's like to be on high levels of narcotics and an ever-increasing tolerance. I've absolutely been there. The only hope that I can give is that I DID taper myself down to a very low level of meds.... and suffered through a few horrendous months. That's the bad part. The good part is that things that didn't help before ARE finally working; I really think that I might "reset" some of my pain receptors.... or established a new baseline. If you would have asked me - at the levels I was on - if I would have been able to do that, I would have said "never".

I know that you have the ketamine infusions as an option.... but I can just remember the last time you had those and that awful nurse :( :( If you do choose that route, I'd make sure that you explain the things you go through on those meds.... and that you need a nurse that will understand and HELP you.

I hear the desperation in your post, Laura. And you have every right to feel that way - the pain, the lack of sleep, your feet, all of it. But lean on us for support and others in your life. You are a beautiful, STRONG, very intelligent woman who has so much to give. No, it may not be the life that you envisioned for yourself, not even close. And there IS lots of grief that goes along with that, I know. That being said.... in the short amount of time that I've known you - you've taught me tons about your illness (CRPS) and many other things. You have the beautiful teddy bears that you make. And so many other things.

Anyway, I don't know if any of that came across as the way I intended - what I really meant, more than anything, is that I'm sorry you are dealing w/ so much..... please keep venting and letting others encourage you.... and that we all think you are an awesome person with so much to give. Thank you for being my friend.

Hugs, Tina

di43
Regular Member


Date Joined Jan 2012
Total Posts : 108
   Posted 2/19/2012 4:03 PM (GMT -6)   
Hi Laura

I`m really sorry to hear about what you are going through. Thank you for sharing it with us. I really hope you can get some relief soon and some sleep too. I really appreciate the support you`ve given me on this site, I haven`t been here very long but it has really helped me. Thank you for your message the other night, it was very comforting and I really appreciate you sending it when you are having such a hard time yourself.

What part of Australia are you in? I used to live in Melbourne before coming to Europe.

Well hang in there. I`m thinking of you. A big hug. Love Di xxx

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 2/19/2012 4:17 PM (GMT -6)   
Really sorry to hear you are having such a tough time:(...

It's so difficult when everything seems to pile on. One thing at a time would be enough to handle...but when our bodies are just falling apart it really stinks!!

So none of the nerve pain meds (Neurontin,Lyrica, or Cymbalta) worked at all in putting a dent in the pain? To be added to the Oxy of course...As it seems the only way to combat some people's pain is by finding that right combination of pain meds and therapies..

For me...I ended up with MSContin as my long acting med and OxyIR as my breakthough....Even though I switched because of financial reasons as Oxycontin is so expensive (no insurance)....it's worked really well to have two different types of opiate to help....So is this something you all have tried yet?

I also add in my muscle relaxer...and then my sleep med at night. Along with exercise each day, yoga/stretching/acupuncture, massage, injections, eating all Organic...etc...

Obviously you have tried a lot of things...I just find that if one thing takes my pain down even a touch...I keep it and add it to something else....and then everything together with the things I mentioned above...I live at about a 5-7 on the pain scale each day...

Please don't ever feel bad about taking time for yourself...we will miss you on the board...but just like Michael...it's important to take care of you first....And we certainly don't mind any time coming here to vent...That's what we are all here for!!!

We all empathize with you...and wish we had that magic wand....

I am sending you some gentle hugs (( ))....hope you are snuggled in bed this afternoon and can find something interesting/funny on tv to keep you occupied...I don't know what I would do without my tv!! LOL
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/19/2012 11:27 PM (GMT -6)   
gentle hugsss cpr
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/20/2012 5:51 AM (GMT -6)   
Smurfy and Di - thank you. Di - I live just outside Melbourne :) Are you from Australia or did you just live here?

Tina - thank you so much *hugs* You are a wonderful person and I find YOUR strength so inspirational. The ketamine - I agreed to go ahead with it, but I told him that there was no way I was going back to 'JM', where I had the problems with those nurses. He is organising it at another hospital, where I have been many times, but between that and him going away, means I can't have it done until April.

SB - thanks so much for your input and knowledge :) I'm on Topamax, a migraine/epilepsy med that is used on a similar premise. I had major issues with all the others - Neurontin had me itching after two doses, Lyrica I was non-functional with headaches and dizziness that I couldn't handle even on a starting dose. Cymbalta - I've related the story before I think, but it was a true nightmare... I was put on it by a pain psychiatrist, partly for depression, partly for my pain. Within 24 hours I had major personality changes, starting to lose reality, paranoia, constant tears because everyone was having a go at me. Couldn't get in touch with the psych, held out another 12 hours, had just enough of 'me' left to call my GP - who took me off it immediately before I came to any harm. Even amitriptyline has me going a bit stupid - I live at home now, but I had my own place when I was on it and every strange noise had me thinking my house was being broken into.

Other opiates - is difficult for me, because I don't really tolerate them - or they aren't effective. I've been on Hydromorphone - but the one we have here is 24 hour ER. It didn't do much, and its effects lasted less than 8 hours. We've also got Fentanyl - but only in patches - and I'm allergic to patches. I certainly have a fair cocktail - the oxycodone, the topamax, mobic, paracetamol to boost the oxy if I want it, baclofen in my pump. And then physio, massage, other distractions - mindfulness, music.

Love the sig with the snoring pup - what sort of pup? I've got a snoring labrador beside me... who often fights for space with her mastiff x lab 'sister'

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 2/20/2012 9:21 AM (GMT -6)   
Hi Laura,

I'm sorry I forgot more of your story with all that you've tried before...it's always a trial and error with all the different methods/medicines...

I wish we could all find that perfect combination to make our lives better!.

I have an eight year old yellow labrador...and yes...he takes up the other half of my bed too!..He is my wonderful buddy....thankfully he also gets me up exercising each day when I take him for his walk as a treadmill is too boring...LOL He certainly gives me great joy and laughter..

I bet that is a big pup with your lab/mastiff mix!...I wish I could get another dog to have them play together...but not in the cards right now..

I hope today is a better for you...We have a national holiday here today...President's Day....so another day to rest!..

Sending some hugs to you (( ))
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16293
   Posted 2/20/2012 12:11 PM (GMT -6)   
Hi Laura, if I am remembering right you really had a bad experience the last time you did the Ketamine infusion. Sure wish you didn't have such a wait though to get it done. I cannot remember how much it helped you the last time, some things I can remember like yesterday, other things go right out the window.

Laura, can you have any kind of a pain medication in your pump? I know you have Baclofen in it and I do not know if the Baclofen can be mixed with a narcotic or not as well as using the two together in a pump.

Please don't ever apologize for not being around the forum. It will be here when you are feeling better and can enjoy it. Of course you are missed, but your health is so much more important.

Take care.....Susie
Moderator-Chronic Pain Forum

di43
Regular Member


Date Joined Jan 2012
Total Posts : 108
   Posted 2/20/2012 12:47 PM (GMT -6)   
Hi Laura

Shame we didn`t know each other when I was still in Australia! But I`m very glad to `meet`you here anyway. I`m from New Zealand and lived in Australia for four years.

I`m glad you have two dogs to look after you! Animals are great friends, they are very comforting, they seem to know when the pain is really bad.

I also couldn`t tolerate Cymbalta, I had awful nausea from it, though what you went through sounds horrendous, how scary.

I really hope the ketamine infusions work and will be thinking of you in the meantime. Hang in there. Love Di xxx

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 2/20/2012 12:47 PM (GMT -6)   
Laura,

Thank you, hon, for your kind words. I'm SO glad you are going to a different hospital. Dealing w/ nasty people is the last thing you need. I will pray that the ketamine helps you.

I've thought the same thing as Susie - have they ever talked about putting an opiod in your pump? I think Fentanyl is one of the best pain relievers out there for people that have tried everything and have severe chronic pain.

Anyway, just wanted you to know I'm thinking of you! Hugs, my friend! Love, Tina
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