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Friedspine
Regular Member


Date Joined Feb 2012
Total Posts : 21
   Posted 2/4/2012 3:56 PM (GMT -6)   
Hey CP sufferers. 

Post Edited (Friedspine) : 2/9/2012 10:36:05 AM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 2/4/2012 7:01 PM (GMT -6)   
Hello Linda and welcome to the chronic pain forum. Thank you so much for doing the wonderful intro post that you have done here. I think I greeted you in another members post earlier.

Everyone that comes here has a story to tell. Wow, after reading yours, I have to say considering everything you have gone through from accidents to the health issues you have really been put through the mill so to speak. However, with that being said your attitude and outlook on everything is to be commended and had it not been for this you would not be where you are today. Kudos to you and keep up the good attitude and good work. It is truly refreshing to see someone be as positive as you are. I know many times it can be easy when we are suffering to just give in and think things will not get any better. Well, in many ways unless we are willing to change our way of thinking and outlook on things nothing positive will happen. I try to remember no one said in this life things would be easy and there is always someone a lot more worse off than me.

That is really something you being the first patient to undergo the ultrasonic rhizotomy and even better that it was successful. Many of us here have had radio frequency ablations done to the nerve roots, some with success and some not.

We also have members here that have been dx'd with complex regional pain syndrome. That is a whole different can of worms to open up and something I would not wish on my worst enemy. I do hope this is something that turns out not to be true in your case since the drs are sort of at odds right now on that dx. Have you done much research on this disease and do you think you have a lot of the symptoms that correlate with the disease? Is the injections and prolotherapy treatment or your leg? I do hope that you will keep us informed on how you do with this treatment. When is your appt with the new orthopedic?

Again, welcome aboard and thanks for doing this intro post, now everyone can pop on and say hello and welcome aboard. The weekends tend to be a little slow around here so please be patient.

I do hope that your husband finds a job real soon. My husband is retired and having him underfoot every day can be a little trying, lol. Take care.
Moderator-Chronic Pain Forum

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 2/4/2012 9:12 PM (GMT -6)   
Linda one thing I forgot to mention to you is before agreeing to the Prolotherapy if you are a candidate for it, be sure that your insurance company will pay for it. As it is now most will not pay for it as they says it is not an acceptable form of medical treatment and not enough evidence to prove it works. It is very expensive too. I am wondering if the plasma platelet injections are viewed the same way.

I remember back in the early 80's when they were first dxing CRPS, it was called Reflex Sympathetic Dystrophy and insurance companies did not accept it as a medical condition so naturally they would not pay for care either. I worked as a paralegal and we saw it in women who either had a surgery of some kind usually limited to a limb or some type of injury. There was always skin discoloration, changes in the skin temperature, swelling to name a few, but just incredible pain that really could not be explained and it was nerve related pain that regular pain meds just do not touch.

Also, any time you feel the need for a vent by all means bring it here and get it out, this is an excellent place to just let it all go. Take care.
Moderator-Chronic Pain Forum

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/4/2012 11:29 PM (GMT -6)   
Linda, hi - and welcome. What a lot you've been through. I'm so sorry that CRPS is on your list - from what you're describing it certainly sounds like a real possibility. I've been living with it nearly 13 years now, and it's not something I'd wish on my worst enemy. The signs certainly do include swelling and colour change - also temperature change, muscle atrophy, skin changes, changes in hair & nail growth, changes in sweating and so on.

Please DO NOT let ANYONE go through with destroying the sympathetic nerves if they think it's CRPS... I've heard of nothing but bad outcomes with this procedure. The usual procedure would be to do sympathetic nerve blocks in the lower back - these are temporary, but if the pain is 'SMP' can help to 'reset' the system. Sympathectomy on the other hand - can ultimately increase the pain, can cause problems due to nerve regeneration, can cause spread, skin problems due to lack of sweating, etc., - there is also always the risk that you will have the procedure and the CRPS will progress from SMP to SIP (sympathetic independent pain). This progression can occur anyway - it's where I'm at now - and is much more difficult to manage. If they believe that CRPS is a likely diagnosis you must push hard for treatment - the chance of remission decreases the longer it goes untreated.

EMG's are not necessarily diagnostic with CRPS - the only real reason for doing them is to see if there is other obvious nerve damage accounting for the problems. I've never had one, but I know how painful just tiny injections and the like are in my arms and legs. I hope that yours is not too painful.

If you've got any questions, just ask

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 2/5/2012 4:11 PM (GMT -6)   
Linda, I have to agree with Laura about the EMG. EMG's are not all that reliable to begin with and I sure would not rely on that test to determine if its CRPS. The accuracy of EMG testing is somewhere in the 75% range and that is not enough for me. Back when I worked I saw more normal EMG's than positive ones. Those were on testing hands for Carpal Tunnel Syndrome. I cannot tell you the countless times we had clients that had normal EMG done on the lower extremities and when the surgeon went in to do back surgery he found pinched nerves with a normal EMG study in hand. Go figure that one.

I do know some people with crohns disease are treated with a very low doses of Naltrexone. I have 4 different autoimmune diseases that I am being treated for and have done quite a bit of research and reading about. I can see a little of what the dr says about it being related but on the other hand its more of a nerve related thing I think-so that sort of knocks it out of the autoimmune class.

I am so glad Laura posted, she has a lot of experience with CRPS and I knew she could give you plenty of insight. By the way my name is Susie, please feel free to call me by either name. Keep us posted and take care.
Moderator-Chronic Pain Forum

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/5/2012 6:26 PM (GMT -6)   
Hi Linda,

I know it's hard to question your doctors - but if they're talking about using cortisone as part of a sympathetic block, I'd want to know why. Perhaps you can find a tactful way of doing so? Okay, I'm not a doctor, but I've been around a while, talked to a LOT of CRPS patients, and I've never heard of it being done that way. The usual procedure would be to use something like bupivacaine or ropivacaine (a long-ish acting local anaesthetic) plus possibly an opioid... my stellate ganglion block was local anaesthetic only, but my lumbar blocks also included fentanyl.

Your sensitivity doesn't sound good... I'm guessing that without a solid diagnosis, nobody would have talked to you about things like desensitisation? It's a horrible process, but super important, otherwise it just tends to get worse. You need to start out with something very soft - e.g. cotton wool, and get used to touching your leg with it. Gradually increase the pressure you're using, and change the textures of the materials you're using - go to rougher materials - fabrics, towelling, etc. Letting rice or warm water fall on your leg can help as well.

Something else you might want to try is Mirror Therapy. It can leave you feeling a bit strange - it certainly does me - but what you are trying to do is 'retrain' your brain and convince it that your bad leg is normal. There are all sorts of fancy mirror boxes out there that you can buy, but all you really need is a large mirror that you can put between your legs - the aim is to block your affected leg from view so that what you see is your good leg and a reflection of your good leg. You do gentle movements with your good leg, touch your good leg, while concentrating on the reflection... this makes your brain 'think' that your bad leg is moving and being touched without pain.

Neurontin obviously isn't much of an option for you med-wise, but have they tried you on any other meds? E.g. Lyrica, Cymbalta, Topamax? These are all quite commonly used for CRPS pain. The low-dose Naltrexone... it's not offered here, so I'm not that familiar with it. I have one good friend in the US who's tried it but had an allergic reaction to it - I know of a couple of others who were going to try it, but not sure of the results they are having.

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 2/5/2012 10:54 PM (GMT -6)   
Linda, now I have it straight, this is EMG is for the low back issues. Just as a heads up if the test comes back normal keep in mind that is not meaning you don't have nerve involvement at all. I think with most drs its what their usual line of testing consists of and they go down their check list of what test can be done. Before MRI's came on the scene a dr would do any type of spine surgery unless the patient had a myelogram. Now you rarely hear of a patient having a myelogram and at one time that was the gold standard of testing.

I live in Tx and of course our weather changes from moment to moment it seems like. We were in the low 70's a couple of days ago, then dropped to the 30's and 40's. These changes make a body hurt, lol.

Hope you can get the spasms under control and get some relief. I am on Baclofen for spasms and can say it has worked well for me.

Take care.
Moderator-Chronic Pain Forum

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 2/6/2012 5:52 AM (GMT -6)   
Hello and welcome to HW!

I do not have additional info on CRPS (thank goodness), but I wanted to welcome you.

I just read your thread and wow what an experience you have had! I have to admit I was stunned about your treatment opportunities. Here (South USA) there are very few options available for almost anything with the back. My TLIF failed (L5-S1) and L4 is now herniated, as well as most of the C levels and some of the T's. It's a real problem, because I'm not willing to go through another back surgery unless it is absolutely essential.

You have so much going on! I wish I had helpful info for you, but it looks like you have done your homework and are well prepared for anything that follows....and your attitude is wonderful! It's like a breath of fresh air when you open a window on a cool morning.

I did notice that you have a hearing for SSD next month. I'd go ahead and do any testing that my Dr ordered between now and then. They get Dr's notes and you don't want anyone saying you fail to comply with "instructions". Also, I noticed you like to "dress"....for the hearing....don't. I don't mean to say go in sweat pants, but keep it very plain and you may want to skip the makeup. I know I look soooo different when I put on makeup, clothes, and jewelry and my PCP always thinks I feel great when she sees me (until she talks to me). If I don't put on make-up, she immediatly wants to know how I let myself get so sick before coming to see her....lol

Surely you have an attorney, but they don't tell you everything.

I wish you all the best. You strike me as a person who never expected to need SSD. I never expected to need it. I thank God I had a medical retirement program too, but I never expected to use that one either. I also bet your education is going to go against you like mine did, but a good attorney can take care of those issues for you.

I don't know if you drive or not, but don't drive to your hearing (if you still drive) and please realize that you are on camera from the time you drive up to the building (at least in every hearing office in my part of the state.) I know you deserve to be granted, but sometimes the gov't has a strange way of thinking.

Good luck!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet, Vision Issues & much more.....

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 2/7/2012 11:50 AM (GMT -6)   
My sincerest prayers are with you. I have nothing more to add, as I do believe that the mods have certainly been very helpful to you. But I do pray and I will keep you in my prayers. You certainly have been through the wringer. I do believe there is a reason for everything, but I also think you need all the strength and support you can get. I'm glad you came here.

I am certainly impressed by your ability to keep going and be positive about it all. You are an example for anyone going through chronic pain. I for one, admire you.

Blessings,

Lindaloo
Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.



Linda

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 2/7/2012 12:46 PM (GMT -6)   
Hello, and welcome to the place no one wants to be but all are glad to be here.  The cp forum, its been almost a year since I (well my daughter) found the HW forum, and I can say this is the one place where all know what its like to have chronic pain.
 
Now, OMG, how much can one person take.  What a strong person you are.  I am not sure if I had the guts to keep going outside.  As a personal aside, please when you leave your house, have all of you body armor on. lol. Except its not funny, please do not think I take what you have been through lightly, but in my life without humor, its hard to get up and dress everyday.  Which by the way I dont do.  I have long since recovered from the depression that follows cp patients, I have no husband, so when I dont get dressed, who cares, the dog seems fine with it.
 
I live with my youngest daughter and her finance, who I now call "mom and dad", seriously they think they are my parents, I am 58 years old, both my parents have passed years ago.  Sadly my youngest suffers from the "I am always right" syndrome.  Its very difficult to live with sometimes, as she is 26 and has so much more knowledge than I do, I wonder how I made it to 58, but thats my problem.
 
I am so glad you have the support you need from your husband, this I am sure has made it much easier for you, and there is nothing easy about chronic pain.
 
Keep coming back, all posts are valuable and you are an inspiration to all.
 
I hope you get a correct diagnosis for your cp issues, believe me thats part of the big picture.
Take care of yourself,
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson
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