CRPS sufferers...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

educ8athome
Regular Member


Date Joined Aug 2011
Total Posts : 79
   Posted 9/6/2011 2:47 PM (GMT -6)   
My father suffers with CRPS.  He suffers HORRIFICLY after an accident about 7 or 8  years ago.  It took nearly 3 years to diagnose him.  He's got other health issues, but the CRPS really does have him crippled to the point of almost no return.
 
I believe he puts up a front to me on how bad the pain is.  He knows that I suffer from chronic pain (I have not been diagnosed with CRPS, but he fears that I may have CRPS) and doesn't want to complain...plus it is the whole "diapered butt" syndrome.  I am suppose to talk to him, he's my daddy.  He's suppose to "man up" for me, because he diapered my butt and that's what daddy's do.
 
What works/doesn't work for you?  He is on oral meds, but I just feel like there has to be something else that can be done.  His hands are in terrible shape, his legs aren't any better.
 
TIA for offering any info.

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 9/6/2011 6:52 PM (GMT -6)   
Hello educ8athome and welcome, I am very sorry it has to be that your here about CRPS or as I still call it RSD which was its first name. This disease is beyond cruel to say the least. In answer to your question about options available to him beyond medications there are a few different options available and alot depends on where you guys are located. First off your correct medications are basically the least helpful option to RSD patients, I've been on about every pain medication there is and one doses higher then most cancer patients get and still have yet to see a pill be any helpful at all, there worthless. Although some doctors do try to use a mixture of muscle relaxers(Baclofen,etc.), anticonvulsants (Valproic acid, etc), and fibromyalgia drugs such as cymbalta, savella, and Lyrica aside from just pain meds. But usually little use any of them are.

In terms of options available to your dad nothing is going to work in seconds understand has he has apparently been let go and from what you have mentioned because of being let go he has full body external now. An intense physical therapy routine and nerve blocks can be very helpful to a lot of adults. The hard part is getting yourself to work through more pain to get better. A lot of times adult RSD suffers attempt some form of physical therapy but sadly the PT's themselves are not educated in RSD and do not help push the suffer as hard and for as long as they need to be. But for those able to find someone who can truly help and push them as far as they need you can regain control over your body and even with the use of nerve blocks get to the point of what some would call remission. Understand there is no 100% cure and even those that find remission can relapse again. Out of all treatments physical therapy is the best because it literally forces the body to reset the nerves (but to note beware of nerve blocks while they should at least be attempted they are a 50/50 as nerve blocks can either help or make things worse). A lot think that once full body PT is not possible but it still is it just simply takes longer to do.

Aside from that option there is also IV Lidocaine infusions which are done in the hospital and over a period of a couple days at which the dosage can be greatly increased and worked with to possibly find relief. RSD is a tricky disease to treat as everyone's RSD is different and take different treatments to find help. There are some doctors that do in office treatments of a short quick IV Lidocaine treatment or shots of Lidocaine but overall to see if this treatment would be helpful you need the complete IV infusion. There is a doctor in Litiz, PA that does an excellent IV Lidocaine infusion treatment and has treated 1000's of RSD patients with his protocol. He also worked with Dr. Schwartzman as well just to note. Aside from that there is the possibility of the use of a pain pump which can be used to pump meds such as fentynol and Bupivacaine which some find some relief from. But it is no promise but a trial basis can be done to see if it would help by the use of getting a epidural and having them put these meds in and see if it is helpful or not before going ahead with a surgery for the pump. Which you have to be careful about any type of surgery being done as it can cause RSD to spread.

There is also Ketamine which it is widely thought of to be one of the best treatments along side of the PT route but the reason I have put this lower down the list is because trying a ketamine treatment before trying all other options first is not such a smart idea. Ketamine should be a last resort option after trying everything else because of the problems Ketamine can create. It is not a wonder drug, yes it has been found to help some but its been found to leave even more suffers with bad complications from it or no help whatsoever. But this is an option and there are many places throughout the US that will do these types of infusions. Its just the idea of finding the right doctor to work with you and also your insurance of course.

The last option I am putting here I would not recommend in any form whatsoever as its use has created more pain and more problems for RSD suffers then help. That is the spinal cord simulator. This option IS NOT a good idea for any RSD patient no matter what level of RSD they have. The reason being is this treatment often well frankly to be honest 90% of the time will only cause your RSD to be worse. A lot also get it put in and then years down the road it stops helping. Especially in the case of your father no matter what any doctor tells you (which remember most of them only care about getting more money) never allow yourself to fall for the spinal cord simulator, even with the trial they are able to do I urge you do not do it you will regret it. Of course the decision is always up to you and others might tell you to go for it but I have yet to see anyone with RSD which is at the level of full body or greater get help out of it. Let alone a level one or two.

I hope your dad is able to find a good doctor to work with him and actually be there for him throughout the rough road ahead. Because of RSD still being not completely understood there are still a lot of ignorant doctors out there that do not believe in it and still ignorantly think its all in your head. Hospitals are not safe either as with RSD pain there are a lot of times the pain is outta control even beyond what you usually deal with and some suffers think that taking more meds on top will help which when you try to explain your pain to some doctors or ER's they can be so low as to try to admit you to the psych floor because of being honest about taking more meds. I know quite a few RSD suffers that have had to deal with this ignorance. I wish him the best of luck and if there is anything else do not hesitate to ask. I started with RSD at the age of 13 and have been dealing with it for over 8 years. I've seen 2 of the top specialists in the US (Dr. Schwartzman(Adult Specialist) and Dr. Sherry(Youth Specialist)) and have dealt with finding out how the nightmare can continue beyond external into internal. As well as having RSD cause multiple problems. Its stolen and destroyed my life and has not allowed me to find any relief even after doing just about every treatment possible. But through this ordeal I have met a lot of suffers and help as many as I can as when I started there was no one to help me or recommend stuff and don't want anyone to have to deal with that. I have a group of close RSD friends on fb and if you should like your welcome to come join us if you would like.
I currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

educ8athome
Regular Member


Date Joined Aug 2011
Total Posts : 79
   Posted 9/6/2011 8:15 PM (GMT -6)   
LW, thank you so much for the detailed information. We already know that the spinal stimulator is a no-go. A pain pump has been mentioned, but hasn't been acted on. He just takes the oral meds and sleeps...and sleeps...and sleeps...as much as he can. He has other health factors too, but getting control of the pain is a huge issue.
I am unable to come up with a clever signature. I don't even really have a true diagnosis. I am on percocet and robaxin for chronic hand pain. So, in lieu of a dx and all, I'll just say that I am the daughter of an awesome and mighty KING, THE King of Kings and it is only through Him that I am allowed to live each day.

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 9/6/2011 8:35 PM (GMT -6)   
I really recommend the IV Lidocaine infusion to try and if some benefit is found then add the Physical therapy on top. I am glad he is able to sleep though that is very important and a big plus. I know it is probably mainly from the depression brought on from the pain but its still a lot better for yourself then the insomnia from pain like some of us have. What I forgot to say was the reason he probably is not speaking to you about the pain completely is because it can be hard to try to get someone to even begin to understand what the pain is like as well a lot of times it can drive people that you love and care about away.

RSD while it is a disease it's far more than just a disease and unlike any other in the fact that its like a puppet master and takes full control of you after awhile. Its fun is to torture its victim with unimaginable pain and if its able to progress to worse states it can then start a new game of doing near death stuff to you. It works over time to push away your friends and family and seclude you so it can gain more control. It also feeds off the normal body's response of "if there is pain something is wrong and doing stuff that causes more pain is wrong" when in fact with RSD its the reverse if you have sensitivity you need to do stuff to desensitize it. The best thing to do is build up a support of fellow suffers. My group I have on fb with my closest RSD friends is a life saver I don't know what I would do without them.

If I may ask what medications do they have your father on at the moment?
I currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/7/2011 3:53 AM (GMT -6)   
Hi Cathy,

I'm sorry about your dad. It must be truly terrible watching him going through this and feeling unable to help.

I've had CRPS for 12 years - mine started after a knee injury when I was 14 and wasn't diagnosed for six years, in which time I'd had another knee injury and further surgery. It's since spread full body with internal involvment - gastroparesis and dysautonomia (can't regulate my blood pressure or heart rate properly for example), and I have a lot of other problems resulting from that.

LordWood has given you some wonderful information. What sort of oral medications is he on? A lot of the typical pain medications are less useful for CRPS pain when used alone - often need to be used in combination. I too can't emphasise how important physiotherapy is!

I will disagree though LW about SCS always being a bad idea - I have had a lot of ups and downs with mine, but without it I wouldn't be wearing pants, wouldn't be wearing socks, wouldn't be able to have a shower... It's very true however that it's a course that needs to be considered with a lot more caution than perhaps it is at present.

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, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

antsawol
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 9/7/2011 8:27 AM (GMT -6)   
On top of the pain meds, I find the lidocaine patches work ok on places of high friction or pressure like my feet and forearms. I also swear by ALA (Alpha lipoid Acid) 900mg 2x a day. It's a strong antioxidant. I think it works as well as the pain meds. I'm asking my PM dr tomorrow about trying ALA infusions. I've always been skeptical about natural remedies, but I swear by this one. Good luck.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/7/2011 6:45 PM (GMT -6)   
Speaking of infusions - they're still in early/trial phases, but keep an eye on IV Immunoglobulin (IVIG). It's a possible emerging treatment for CRPS that my doctor and I are exploring for me at the moment.

There is a paper HERE if anyone is interested in reading.
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, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 9:45 AM (GMT -6)
There are a total of 3,005,663 posts in 329,249 threads.
View Active Threads


Who's Online
This forum has 161795 registered members. Please welcome our newest member, jjakefamily.
269 Guest(s), 9 Registered Member(s) are currently online.  Details
George_, jjakefamily, BillyBob@388, Chow Wan, Alxander, InTheShop, RunJerRun, andwes, (Seashell)