New RSD member

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New Member

Date Joined May 2012
Total Posts : 10
   Posted 5/5/2012 9:42 PM (GMT -6)   
Hi everyone,

I don't know where to start besides saying thank you to those of you strong enough to be there and speak about your experiences and really follow through with communicating some seriously difficult issues.

I am a new member, signed up today. I am fairly new to the RSD world, as my initial injury was only six months ago, and my actual diagnosis by my neurologist was only two weeks ago. I am thoroughly upset and confused and lost and appreciate any guidance.

Everything started on Nov. 11, 2011, when I tripped over my dog, and while falling, stepped on my left big toe with my right heel. Instead of just removing the heel from the toe and falling, I gracefully ripped the left foot out from under the right foot... felt a "pop" and silently cursed while hopping up and down, to not wake up my sleeping husband and daughter. Next day, went to ER... pain was moderate... ER DR gave me X-rays, which he took almost two hours with to tell me that I had a hairline fracture, but I need to see a podiatrist asap. Then, the wonderful DR put a fiberglass piece around the top of my foot (wet it and made it so tight I could not bend any part of my foot) and that's when the pain really hit. My husband was next to me, and when they put that piece of evil on my foot, my eyes started tearing uncontrollably, the pain went from a 2 to an 8.

I went to a podiatrist, who put me in an orthopoedic boot told me I had no fracture, and that my "pain was inconsistent with a fracture anyway" so he sent me for an MRI.

MRI was "unremarkable." minor contusion and small ganglionn cyst. He told me that it would heal on its own and to take the oxycodone for the pain.. barely cut through it...

January, started feeling relief, so I thought the "bone bruise" was healing... two weeks later, the evil night pain came back. My skin looks shiny, red/purple/blue/ spotty bruising, horrible swelling, I feel like a machine is inside my toe grinding my joint to dust... my throbbing and burning seems like a pleasant memory... so I go back to the doctor, who is totally unavailable until March 1.

Then, four months later, he says "your pain is inconsistent with your injuries (duh, you said that in December), You may have something called RSD"... finally reality.

Went for second opinion to orthopoedist. FInally got in with a neurologist, who diagnosed RSD without and EMG due to color/swelling/temperature difference/ shiny skin/..... Diagnosed at 5 1/2 month.

Pain is moderate at times, manageable during the day ( I don't usually end up in tears or choking at work)

Pain has spread from toe to entire foot. I can see something popping out of the bottom of my foot before the pain escalates.

My husband is maybe out of denial and on board?

I am going for Calmare treatment Monday, with hope of something.... Anyone have advice?

I am just lost and depressed. I am also completely unwilling to let this take over my life and I will not let this beat me. I will fight until the end and I will stand by anyone who needs an advocate.

Just looking to make contact.

Right now, I am on gabapentin. just started, so at 600 mg/day. DR has me doing a bone scan... pain is variable, mostly happens at night, and gets to the point that I feel like I am breaking apart on a sub-atomic level, but it is localized thus far to near the initial injury.

Any input is welcome.

Thanks for listening.

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 5/6/2012 12:27 AM (GMT -6)   
hopebutreality Welcome to Healing Well Chronic Pain Forum, I am really about what you  have been through and what you continue to go through right now! We have quite a few people here on this forum that suffer from RSD so you definitely will not be alone here on this forum! You know we can not fix you, but we can empathize with you and lend you our ears and be there to listen to you, and of course give you kind caring and compassionate support. I think you will find that we are like family here, and I am glad you have came here to share with us your chronic pain problems. I think you might be surprised how kind and caring our members are to each other! I really do think this is a great place to be if your suffering from any type of chronic pain.
I am sure there will be many other members coming here to also welcome you, and hopefully some of them might have so great advice  to share with you that might help ease your pain.
Again I Welcome YOU
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

New Member

Date Joined May 2012
Total Posts : 10
   Posted 5/6/2012 12:58 AM (GMT -6)   
Thank you for welcoming me.. I am so glad to be able to speak and be heard. Thank you.

I do have a question that you, as an RN, may be more qualified to answer ... when the doctors gave me pain meds, they barely helped... the oxycodone barely cut through the pain. My question is this, I guess.. does neuropathic pain have a different means of transmitting pain and do traditional pain killers work as well for neuropathic pain as they do for physiological pain?

thanks for being patient with me.. I have so many questions. I am so glad to get a diagnosis, but so frustrated that there is no answer. I know that you understand.

Thank you for taking the time to welcome me and help me understand this.

What was your original injury, if I may ask? i don't even know if this is an appropriate question... I am sorry, I am lost.

Veteran Member

Date Joined Mar 2011
Total Posts : 1276
   Posted 5/6/2012 6:41 AM (GMT -6)   

What you've noticed is a very common thing - traditional pain medications aren't as effective for neuropathic pain as they are for other types of pain. For this reason, first line 'pain meds' for CRPS/RSD and other neuropathies are actually certain anti-depressants and anti-convulsant drugs. Opioids and anti-inflammatories have their place - I personally have found some relief in a combination of Topamax (a med for epilepsy and migraines), Oxycontin (which when I was taking it alone - did almost nothing), and Mobic (an NSAID). I hope the gabapentin is successful for you.

I don't know if you this will get to you in time - but if you want to email me off-board --- by clicking on the little envelope under my name - I can put you in touch with a friend of mine who has done the Calmare treatment. She didn't have great results personally, but I'm sure she'd be more than happy to talk to you about the experience itself - if you wanted to do that.

I know that you were addressing White Beard - but I am sorry for your frustrations. Have you got a good pain management specialist on board? The neurologist who made the diagnosis - has he/she got experience with CRPS/RSD? I know Kristi/Rhaevin replied to you in the other thread - and as she said it's important to have a good doctor on your side - someone who takes you seriously.

Take care,

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

New Member

Date Joined May 2012
Total Posts : 10
   Posted 5/6/2012 9:06 PM (GMT -6)   
Thank you Laura,

I think I want to try this treatment with a completely open mind, but I will gladly share my experience after. I am so thankful to have found this forum and am super thankful for you help and your willingness to share your experiences and link me to people who can help. In the future, if I can be the person who can help someone else, feel free to give them my email. I will send you an email off-board soon to give you my contact info.

Is it ok if I share a link to things I find about studies being done to help chronic pain? I looked at the forum guidelines, and it looked like this may not be allowed, so I thought I should ask for advice. I understand that this is a support network, and that some studies may be misleading and dangerous to follow, so I thought I should run it by a forum moderator. I want to stay involved, but I don't want to cross any lines.

Thank you for your advice and for being so responsive and open. Let me know if I can help anyone you communicate with, in any way.

I will be finding my PM dr in the next two weeks or so, and I have to say, I have had some frustrating experiences with other types of Dr's that do not know this disease. I would have been treated earlier if I or the doctors were more knowledgeable, so I have taken it upon myself to gain as much knowledge as I can. How else can I choose the right PM dr.?

Thank you for everything.

Veteran Member

Date Joined May 2012
Total Posts : 828
   Posted 5/7/2012 12:33 AM (GMT -6)   
I've got Cerebral Palsy not RSD, but I do have pain; a lot of it. It can be tough to get through your "normal" routine, especially when the pain is worst at night so sleep is crappy and inconsistent. But I find trying to stick to as much normalcy as possible really helps overall. Keeping up with college has really kept my mind on track rather than focusing on the negatives of my condition.

Having support helps too, even if it's just coming here to vent. And sometimes you'll need to cry, don't deny yourself that, it can really help in terms of letting go of some of the anxiety and stress and worry and uncertainty.

You said your husband is maybe on board. Maybe on board with the treatment? Or with the diagnosis etc?

The best advice I have for choosing the right doctor seems pretty simple but can be hard want someone with experience...but you also want someone who makes you feel comfortable, someone who you find it easy to communicate with. That really helps in the long run because sometimes it can be stressful if you feel like your doctor doesn't understand "you" or "what you mean" when you say certain things. Until I found my current dr, I was ALWAYS afraid that I wouldnt be understood, or heard, or that I would say the wrong thing in the wrong way, or I was embarrassed. Which ended up making me afraid to talk and getting what I needed was difficult. Pain is subjective and you need a dr that understands that you're the best advocate for your body. If that makes sense.

We're all here for you, and we're all here for pretty much the same purpose, support, understanding, knowledge, and to maybe be able to help others through our misfortune. Welcome!

New Member

Date Joined May 2012
Total Posts : 1
   Posted 5/7/2012 9:17 PM (GMT -6)   
. There's not one definitive test for RSD so most drs especially neurologists (my opinion of course), can't /won't diagnose it or they are totally unaware of this disorder which I find it to be mind boggling. 2008 injury to top of calf, lower thigh and ligaments around the knee on rt leg. I didn't think it was a complete tear but definitely more than a pulled muscle. I stuck it out for a few months and thought it was healing. Oops re-injury and w/in days swellled up 2xs the size of my other leg. GP doc put me on an antiflammtory between X-rays, MRI etc. Nothing according to a few specialists in the meantime part of my leg continues to swell and I literally could feel fluid dripping from the injured area. Eventually I developed all the characteristics that I now know as RSD. In about 2 weeks the same occurred in my left leg and lower back. In about 4 mos I still had no answers but my GP and PA were my support the entire journey. When each referral went nowhere, they remained intent on helping me find an answer. a 2nd ortho doc referred me to a neuro .. All 4 would diagnosed me with neuritis and a prescript. But no answer to the cause of the pain, sensitivity, swelling and color changes. Meds only helped w swelling a bit. Btw Mayos declined the referral....they werent sure how they would help me. Huh?very dissapointing. Aftr crying hysterically w a neuro nurse, i was referred to Iowa City. beautiful hosp and staff but a jerk neuro. He said I s diabetic....and he wouldn't order the glucose testing to occur there! Had test w/in 48hrs bc of my GP. Results..better than normal. After ongoing pain and little sleep, my PA had seen enough and went for the big guns...fentanyl. It was life saving...reduced the pain and kept my sanity. After persistent Internet searches and specifically following the IA debacle, I opened up my computer and went to work. I found it! After I saw the definition of RSD, I was 98% sure it was it! I then found a specialist at RIC in Chicago. Diagnosed and went 4 weeks rehab. Made some very modest improvement. The best thing was to confirm that I wasn't going crazy. Cont fentanyl for a total of 4 months. Doc was concerned about side effects. I'll skip the ups and downs to get to my point... Myofascial Release (MFR) was my answered prayer! A friend had gone thru therapy for her fibromyalgia in Sedona Az at the John Barnes Instiute and she came back an entirely different person! With her encouragement. I went for 2 sessions. I cried on the table but not from pain but from sensing Hope was on the horizon. when I came home I was in search of a physical therapist trained in MFR. AGain another blessing...a therapist in my same town! I've been seeing weekly, initially 3 times pr/wk for 1 1/2 yrs and I can wear socks and shoes and even wide legged very light material pants....I still wear shorts most often but ar least for weddings and funerals I can tolerate it for a few hours. That's a huge step! My partner has been unbelievably lovimg and supportive. We will be married this September so it is my hope that I can find something to wear and ..the biggest milestone being able to dance at my wedding. Please give physical therapy, specially MFR the John Barnes techniques a chance to make a difference. Keeping mobile is so important and it's so very helpful to have a knowledgeable PT along for the ride. My heart goes out to those who don't have the loving support b/c as you have read, this disorder affects you emotionally too so the ability to post your feelings and also learn about various effective treatments gives us hope.
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