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Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 586
   Posted 7/24/2011 5:18 PM (GMT -6)   
For those that have experience with CRPS or RSD I am wondering what seems to helps you when you have a flare? Over the last couple days I seem to have some increasing symptoms. Pretty much feels like a head to toe throbbing brush burn right now. Usually I have several spots here and there, randomly coming and going throughout the day but this is absolutely rediculous.

I have my monthly PM appointment on thursday but I think I will be putting a call out to my Dr in the morning, but just wondering what people have found on their own to ease the burning during these times.

Thank you,
Shell
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1117
   Posted 7/24/2011 8:43 PM (GMT -6)   
Oh Shell, I'm sorry hun. I've never had any experience worse than a CRPS flare, so my heart goes out to you.

Do you have breakthrough medications you can take? When I have a flare with bad breakthrough pain, I start with Endone (oxycodone IR), paracetamol (acetaminophen - because it can have a synergistic effect with the oxycodone) and depending on my symptoms sometimes a non-steroidal as well. My CRPS is usually 'cold', but sometimes I get what I call a 'hot flare' where not only do I have the burning sensation, but my limbs are beet red and actually radiating heat. I'm on Mobic (meloxicam) as part of my regular pain medication, but my doctor has okayed me using low doses of Voltaren (diclofenac) as part of my breakthrough when I get these hot flares.

Can you tolerate a bath? Sometimes a bath with something like Epsom salts or magnesium salts can help, but I also know how hard it can be to tolerate the water on your skin if your sensitivity and burning has arced up.

Do you do any behavioural stuff? Self-hypnosis or mindfulness for example? If you don't, it might be something worth looking at to deal with future flares.

Off to talk to you in chat now :)

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 586
   Posted 7/25/2011 10:58 AM (GMT -6)   
Thank you paula and laura.

Thank you for the info, it give me something to speak to the dr about. I havent been on an anti- inflammatory since my fusion since it is counter indicated and I have slow to no bone growth. But at this point it shouldnt matter.

For breakthru, I have a liquid oxy, seems to work faster for me than tablets. I also have buccal fentynl 200mcg but am really trying to make it last since my insurance will no longer pay for it. I also take alot of excedrin at the same time, it does seem to make things work better for me also.

Bath, lol. I havent been able to go in a bath or a pool for that matter in a while. The theray pool that was kept at 95 ( I think) was torture. It took a good 10 minutes or so for me to even acclimate and be able to move around. It felt good for deep muscle but never on the surface.

I will check out that info for the mindfullness training. I used to meditate daily, but havent been good about it recently. I was trained in Reiki like healing for several years but when my back started to have increased issues it became very hard to continue. We used to attend group meditation/ healing clinics, these were very beneficial, but the woman who ran the groups passed away and no one took over.

I am waiting to here back from my PM dr, but I do have an appointment on Thursday, so I am not sure how far I will get today. We will be reviewing my small nerve fiber test on that day. Have you had this done Laura? Out of the 16 areas tested, I only had 3 areas that responded at 50%, the rest got no readings. Poor technician was confused, she started zapping herself to make sure the machine was working. Then the dr came in and redid the test, since she thought she was doing something wrong.

I may just try voltaren gel on my worst areas today to see what happens, I have it for my elbow. Maybe lidocane patches all over the other leg, Lol. Anything at this point!

Thanks again,
Shell
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

Post Edited (Shell74) : 7/25/2011 11:03:30 AM (GMT-6)


Blessedx8
Forum Moderator


Date Joined Aug 2008
Total Posts : 3190
   Posted 7/25/2011 11:11 AM (GMT -6)   
Shell,
 
I only know about CRPS from what I've learned from all you here.... but I'm sorry you are having a flare of your symptoms.  I hope you hear back from your PM and maybe get in before Thursday.
 
I had to laugh at your lidocaine patches comment... and using the Voltaren gel... etc.  Sometimes, I'll have three or four patches - on my hands, arms, back - hey, whatever it takes to help the pain, right?? :)
 
I also take oral fentanyl (Actiq, 1200mcgs); it works so well because it's so fast-acting.  I wish it helped for *longer*... but at least it's a relief that comes within minutes.  But all the oral fentanyl is so darn expensive - and most insurances balk at paying for it.  We have to do some insurance adjustments in October - and I'm praying that it doesn't mess w/ them paying for the fentanyl.
 
Hang in there.... I hope you get some relief and can get into see your doc!
--Tina

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 586
   Posted 7/25/2011 7:19 PM (GMT -6)   
Hi Tina, thanks for your response. Well, the patches and gel didnt do anything yet, but no worse than before.

Its funny that you mention the insurance. I had a plan with high copays and low payments and many restrictions and I got the Fentora paid for. Just had to show the meds I have allready tried. Then I got new insurance, low cost, no deductible, low copays, no coinsurance, no pre auths and this one wont pay for it no matter what. They will only pay for any of the oral fentanyls if you have a cancer dx. Even though I had been using it for over a year, they still wouldnt make an exception during the appeal process. Its all because of the money like you said. Those meds were the ones that I could take at work without worry of my performance or safety, I had no side effects, just a decent decrease in pain levels.

I have some things to talk to the dr about. At this point I worry that he may not have enough experience in this area. I do like him as my PM dr, but I think we may need more input. I have some names and info to take him, so we will see. Some people feel he is a pill pusher and over injects, but I really have never had that problem with him. He always takes the time to listen and works with me very well. I tried to get an appointment at another PM office that had alot of CRPS related info on their site, just to get a second opinion for treatment, but they will only see me if I am discharged from my current PM. Then they dont have to take me back. I guess they dont want to waste time on someone that will likely not stick around to make them money.

I am supposed to have a huge cyst removed from my sinuses endoscopically on Wednesday, now I am having second thoughts considering how I am feeling. However, if I dont have it done I will never get rid of these bimonthly infections. I could put it off till next June when school gets out, but the idea of decreasing the sinus pressure is so exciting,lol. Its always one thing or another.

Hopefully tomorrow will be a better day! Thanks for the responses.

Shell
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 586
   Posted 7/26/2011 7:26 AM (GMT -6)   
No, they didnt call back yet Paula. Between running to the airport, the mall to exchange internet purchases and to another airport tonight I have no time today. Tomorrow is my sinus procedure, then Thursday my regular PM appointment in the afternoon. Just need to tough it out a bit longer. Today my worst areas are located below my knees so far, just need to keep it that way for a bit.
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 10600
   Posted 7/26/2011 9:21 AM (GMT -6)   
Shell sorry to hear things are really tough for you right now. I hope your sinus surgery goes without any problems and you can get past that.

Let us know how you fair at the appt with your PM dr. You sure are one busy lady for just getting out of the hospital recently.
Moderator Chronic Pain Forum

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 586
   Posted 7/26/2011 10:26 AM (GMT -6)   
straydog said...

Let us know how you fair at the appt with your PM dr. You sure are one busy lady for just getting out of the hospital recently.


Thank You, it seems that a Moms job is never ever done. Pain comes second to everyone else needs it seems.
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2175
   Posted 7/26/2011 11:08 PM (GMT -6)   
Hi Shell I'm glad that some of the pain was better yesterday (after midnight now). I also wish you well with your surgery today. I hope it gets rid of the sinus problems for you. Let us know how you are doing afterward if you can.

I also hope that your PM appointment goes well on Thursday as well. Let us know how it goes as well, ok?

I agree, you are a busy kady for just getting out of the hospital a few weeks ago. I wish you well.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 595
   Posted 7/28/2011 5:06 PM (GMT -6)   
careful with the strong NSAIDS like diclofenac, indomethican, piroxicam, ect., they can take the mucous lining in your stomach right out and then the oral route meds may be tougher. Relafen which is nambumetone sp? and Daypro which is oxaprozin are two NSAIDS that are not super strong but they are also are a lot easier on the stomach and can be daily dosing. Have you ever tried Gabitril or tiagabine? Levo-dromoran or levorphanol? ones is a anti-convulsant one is a potent opioid with action at the NMDA receptor.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

antsawol
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 9/5/2011 7:06 PM (GMT -6)   
Please try Alpha Lipoic Acid. It's an antioxidant. My Dx keeps going back and forth from small fiber neuropathy to full body CRPS (recently dx'ed by Dr Schwartzman in Philly, he said he was positive it is full body crps ), and I think this works as well as all the pain meds the doctors have me on. It can be purchased almost in any food store or pharmacy. It has no side effects. I will sometimes get a little bit of an upset stomach as if I don't take it with food. Please let me know how it works for you. I have always been a skeptical person, but I burn/hurt so bad sometimes that I've given in and tried everything. This is one of if not the only over the counter medicine that has shown me results, and not just minimal. I've never been in contact with anyone with full body crps before. Good Luck, Ant.
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