Hi all,

I was just diagnosed with CRPS and I'm looking for a specialist in Portland, OR. My current doctor is awesome; however, he favors conservative treatment. From the research I've done, this is not the time for conservative treatment as I have a good chance of being able to throw it back into remission if I play my cards correctly (hopefully).

Any and all referrals are appreciated. I've called a million offices and this has been nothing but a headache.

Thanks!

Hi Catfish and Welcome, Hopefully someone will know of a Portland Doc with experience with CRPS. I was diagnosed in Oregon by a great ortho sports injury group-known for working with U of O athletes. I used to live there-I was misdiagnosed in Az where I was living and knew something was bad wrong so traveled back to Oregon where I grew up. So it was 5 years before correct diag. and treatment. So you are so right. time is on your side.
There are lots of great educated people here that will jump in a give you lots of good direction.
The Dr.that diagnosed you-has he given you any referrals? Where is your CRPS and what are your symptoms? Are you in PT? What treatment has your Doc recommended?
I would suggest start reading tons of various threads here on the Crps site. Get as educated as you possibly can in order to make good decisions as to how you will proceed. I've learned a great deal from the educationa and experiences of others here. Again, welcome. loretta
P.S. I just looked up RSDSA.org and went to Resources- Support Group on the left hand side. It has two names and phone numbers for the Portland area. They should be knowledgable concerning Drs. in your area experienced. Hope this helps. loretta

Hi Loretta,

Thank you so much for responding. I'm sorry that it took so long for you to obtain a correct diagnosis. On that note, I'm glad to hear that you were eventually able to get one. I cannot believe what I am reading with respect to CRPS patients and the hurdles that many of them have had to overcome in order to get proper treatment. My mind is officially blown. It shouldn't be this difficult!

Get ready for a novel of a post... I apologize in advance!

The CRPS is in my left foot. It was triggered by an overuse injury called sesamoiditis. The sesamoid bones are tiny, pea-sized bones that are embedded within the tendon on the ball of your foot. They sit in tiny little grooves and, every time you take a step forward, they help articulate the big toe joint. Mine are prone to inflammation because I was born with one of them in two pieces (called a bipartite sesamoid bone). Either that or I fractured it - It’s very difficult to differentiate between the two. The injury occurred in July/August of 2012 as I was hiking and running a lot. It happened gradually. One day, the pain simply didn't go away.

I sought help from a local podiatrist who helped modify my running shoes so that I could continue to walk. Initially, the insert helped to offload the ball of my foot and things seemed to improve. After about a month; however, the pain came back and it was worse than when the injury was first sustained. In November/December, I noticed that my foot had begun to swell while in the shower. The heat from the shower caused my foot to turn bright red and sometimes purple. My toes felt like little blood-engorged sausages from the vasodilation. At this point, I knew that something was terribly wrong. My podiatrist asked me to track my symptoms and also made me custom orthotics to offload the ball of my foot even more. Despite weeks of conservative treatment, I was still in pain. Both my podiatrist and I began to worry at this point because most cases of sesamoiditis are resolved with treatments such as this. That being said, they can be difficult to heal and sometimes require casting and/or surgical removal of the bones. After taking x-rays two weeks ago and discovering bone loss in metatarsal heads 2-5, he diagnosed me with Reynaud's and CRPS. Joy. So not what I wanted to hear!

I did try physical therapy for a while prior to receiving the CRPS diagnosis because the literature shows that PT is a vital component to the recovery process with respect to sesamoiditis. The PT was against my podiatrist's advice; however, as he wanted me to rest the joint as much as possible. I went against his advice and did the PT anyway because my injury had gotten worse and I wanted to explore all treatment options. In some ways the PT helped, but the pain relief was always temporary and things seemed to worsen overall. The PT included active range of motion, iontophoresis, icing, and strengthening exercises. I eventually stopped attending PT due to lack of progress and tried following the advice of my podiatrist once again. Basically, I was to wear my orthotics within stiff-soled hiking boots whenever I was on my feet. No walking barefoot, no bending the joint, etc.

My CRPS symptoms include the following: My left foot sweats a lot; if my feet are cold, my left foot is much cooler; if my feet are warm, my left foot is much warmer; sometimes my left foot is cold and the right foot is warm; my left foot turns bright red/purple and aches in the shower, when I drink alcohol, when I exercise, and sometimes it turns red and hot for no reason at all; whenever I sit down, my left foot gets super cold, white, and sometimes turns purple; my left foot and ankle often feel heavy, dead, tired - I'm not 100% sure how to describe this feeling; my left foot burns sometimes despite the fact that it's freezing cold; sometimes the point tenderness on the sesamoid bones is horrible and sends shooting pain up my leg (other times it's fine); the sesamoids often ache; and sometimes I get a numb/tinging feeling in my foot; when I'm startled by a loud noise, I feel pain in my sesamoid bones; finally, when I'm extremely stressed out, my symptoms seem worse... Lately I've noticed some of these symptoms in my right foot which is really worrisome. I also have bone loss in metatarsal heads 2-5 despite the fact that I've been using my foot. The only assistive device that I've utilized has been the orthotics within the stiff-soled hiking boots. Something that I find odd - the burning pain, the aching pain, and the point tenderness is not always present (unless I were to remove the orthotic and try to walk without it). CRPS is always described as intense, burning pain 24/7. My foot never feels "normal"; however, and it's never gone back to it's normal coloring or temperature. It's always off in some way, shape or form.

I've never experienced these symptoms prior to November/December 2012. Whatever they are, they were triggered by the injury. I've considered Reynaud's, venous insufficiency, erythromelalgia, and CRPS.

No referrals have been made as he's attempting to treat this on his own. He prescribed the following: heat packs on my abdomen and lower back 3 times per day, 15 minute walks 3 time per day, limited caffeine intake, alpha lipoic acid 600 mg, B-125 complex, 1,000 mg vitamin C, 1,000 - 6,000 mg L-arginine, 1,000 mg niacin, 2 zinc lozenges, 1,000 mg calcium, 1,000 mg magnesium, 2,000 IU vitamin D-3, fish oil, and 1-3 220 Aleve pills per day. In addition, he also wants me to listen to stress reducing, self-hypnosis recordings at night.

Although many of these supplements are beneficial for Reynaud's and bone restoration, the literature only supports the use of Vitamin C and Magnesium for CRPS. In addition, these treatments worry me because, from what I've been reading, I should be employing aggressive treatment ASAP. A lot of the research suggests PT, ketamine, prednisone, etc. So far, I haven't noticed any improvement since I've been taking the supplements.

A few questions: How long does it take for improvement to show???? How long do I give these conservative treatments before requesting a referral to a pain specialist? How do I know if the pain I'm feeling in the joint is from the CRPS? In my mind, if it's CRPS related, I should be moving it despite the pain. If it's not CRPS related, I should be resting it and allowing the sesamoids to heal. To move the joint or to not move the joint, that is the question. Is a pain specialist even the person to see?

As you can see, I really need is a doctor who can answer all these questions and who is also willing to refer me out and try different treatment options... I've tried asking my podiatrist about these things but he seems very frustrated by my lack of trust. I get it, but I have to continue to advocate for myself.

My head hurts just writing this lol. Does your head hurt from reading it?

I am scheduled to see an orthopedic surgeon at the end of February who I am hoping will do an MRI or a CT to determine whether or not there is soft tissue damage in the sesamoid area. Hopefully that will help to answer my question with respect to the pain and whether or not I should start PT. From there, who knows! Hopefully he will know someone with a soft spot for CRPS patients… and if not, it’s back to square one.

That's about it. I’m a nursing student and so I can advocate for myself quite well. But no matter how many neurologists and pain specialists I call, I can’t get anywhere. No one specializes in CRPS in the same way that one might specialize in rheumatology or Parkinson’s disease… most pain clinics state that they usually only work with patients who are in the later stages of CRPS… the one neurologist I found had horrible online reviews and he was also out of network for my insurance company. There are so many road blocks. I can’t even imagine what this is like for someone with no medical background…

Anyway, I digress. Right now, I’m following my podiatrist’s orders as best I can and I’m also going to community acupuncture twice per week and spin class at the gym 3 times per week. I start my last semester of nursing school next week and I am worried that I won’t be able to complete clinical hours without extreme pain… hiking boots + hospital floors + CRPS + sesamoiditis = ouch.

Thanks for reading this. It’s one mess of a post. But I figure the more information I lay out there, the more I’m likely to get back. <-- that's just a darned cute icon and I couldn't help but use it!

Hi catfish, that was a cute icon- I am so sorry-I saw your post (at midnight) and have been typing a long answer for over an hour and somehow just lost everything! I'm so MAD- it's 1:22 and can't start over tonight-but will answer tomorrow. Hopefully, others will read your post and join in.
Before I sign off- what do you think of calling the two names on the RSDSA.org website- two people in Portland-group leaders for two support groups.
They usually know which docs are in the 'know' Because crps is a neurological disorder- neurologists makes sense. Sounds like you need a second doc who can confirm or rule out. Portland has 'sports injury' docs. That's why I chose to fly to Oregon from AZ. U of O athletes had been to the group in Eugene, I had been to.
The hand doc knew in 1 minute-handed me print out of crps-ordered tens unit- sent me to nuclear bone scan-(osteoporsis) and started pt next day. Came back to AZ after a week and saw neurologists who did further tests and confirmed-saw hand ortho who confirmed and continued pt with experienced people. extremely painful, but they know how far to go.
I guess what I'm saying is time is critical- movement is extremly important.
The joints can freeze up and never can get them back. My hand was frozen like a board and only got partial use of fingers- frozen to 4 'o'clock (left hand)
Speaking of frozen - using ice on a crps patient is subject of debate. I would say most say NO-some have used it and helped- It's something I don't do.
I'll finish my reply tomorrow- I wish I could find what I have already typed-but will continue tomorrow. Take care,

Hi Catfish, ....starting over from my accidental deletion last night- you have already had one diagnosis of crps- your symptoms are indicator of yes, a very strong possibility- enough to do everything possible 'as if ' it IS. Proceding 'as if' it IS would be the wise thing to do in my opinion. If it is not, then no real harm long term-unless that tiny bone doesn't heal at all. If you go against crps diagnosis, you could lose precious time and possible spread. That is something you don't want. The RISK of worsening of crps is not something you want.
Early treatment is important. Progress is slow. Babying a limb for crps patients is not good. Having an experienced person in pt is important-to push, but know when to stop. Besides 3 times a week, my pt people had me get several plastic bowls- put cotton balls in one, coffee grounds, sugar, rice, beans etc. and run hand thru. 7 days a week. de-sensitization is extremely important.
Warm water therapy is often used. I reversed curling toes by warm water therapy. Now they all touch the floor. I know without a doubt I am typing, walking because of pt therapy. about 200 treatments as well as 200 massage therapy. I had frozen shoulder (really crps, but not diagnosed) That followed an operation. Thank goodness I did the painful pt. Then later moved to other shoulder. Then moved to hand, then other hand, then moved to feet and legs.
But I know longer have the jerks, spasms, electric jolts traveling thru my body, shooting pain. I am grateful for that. The 'sausage' fingers and feet no longer are there. Yes, the burning and ice cold limbs are still there,but I even deal with the pain without narcotics. I no longer take the neurotin. Used to take 3200 mg. of neurotin, cymbalta, vicodin, lorazepam,ambien- Now, take blood pressure meds, heart rate med, and mirtazapine.

Being in the nursing -medical field is good for you. You sound like someone who researches and 'takes charge of their health' That is so important with this disorder.
CRPS is a disregulation of the autonomic nervous system. If you look that up in wikipedia -there is a chart that discusses the sympathetic nervous system and the parasympathetic nervous system as well as vegas nerve. It is the fight or flight response- Like the acceleration(sympathetic) part and the brakes(parasympathetic) of a car. When they work properly -there is the automatic balance. But with CRPS, they don't work properly. We don't have proper regulation of body temperature, heart rate, blood pressure, even digestive issues. That explains why the 'burning up' fluxuation in heart rate, blood pressue. There are also inflammation issues, and blow flow issues.
I have the burning heat and the ice cold (raynauds) I'm on high blood pressure meds, and meds to slow heart rate down, but also monitor it regularly as also can drop blood pressure and heart rate and have syncope. I have had syncope a few times.
Because pain specialists (anethsiologists-board certified) treat chronic pain, many are familiar with crps. Just research any proposals that involve invasive treatment- there are several threads on this forum. It was a neurologist that I had manage my care- but like I said- it was 5 years for me, and I choose not to have any procedures by a pain doc. I've had 3 neurologists- the first one who diagnosed me and started me on neurotin- (had to change when insurance changed) the 2nd one diagnosed me 'generalized or full body' (he died) then the 3rds one for 6-7 years. (He was a neurologist-psychiatrist and internist) good understanding of disorder) He had HBOT in his two offices. I would have tried it, as some have had good results, but lost my insurance. Will be on medicare in May when I turn 65.
I couldn't tolerate acupuncture-tried once. CRPS can results from major trauma or even a simple blood draw. I always ask for the senior person. Ask for a 'butterfly' needle-instead of regular one.
Emotions do effect our condition. Stress is a big one. I don't know about alcohol, but I would guess there is some effect if you are experiencing symptoms.
Neurotin or Lyrica are used my many docs. Also anti-depressants are used. Not just pain meds. Anti-anxiety meds are also used to calm. I had never had anxiety before crps, and couldn't understand my symptoms. It makes sense now-understanding the nervous system and this disorder.
I would think you might have some good contacts in your schooling, that might refer you to the right doc. Hope all goes well with your search. Would just encourage you to read lots of posts here-there are some medically knowledable people here that have quoted lots of pub med research on crps. I'm sure you know how to do that too. The experiences of others in invaluable. Caution in treatment is important.
I forget if it is part of my deletion, but ice is a subject of debate. I would say most here do not use it. some have with relief,
Hope the best for you in your search and also in your finishing your schooling.
Keep us posted how you are doing . Hope this helps loretta

Hi Loretta,

Wow. I don't even know what to say. I'm so sorry that you've had to experience all of this! That being said, I am so happy to hear of your progress.

Thank you for sharing all of this with me. It gives me hope and also some perspective that I otherwise would not have. I need to spend a bit more time on this forum as I think there is a lot of good information to be found!

I sent an e-mail to one of the support group members last night. I will call both of them starting tomorrow - hopefully they will have something to offer. If not, I will continue my search one day at a time.

If I can ask, how long did you try a certain medication before deciding that it wasn't helping?

I am medically knowledgeable to some extent, but it's still difficult for me to advocate for myself when it comes to challenging a practitioner's better judgement. It looks like I'll have to get used to it, however....

Oh and I'm so sorry that you lost all of your typing! I detest that... I always copy and paste my messages into a word document (if I remember to do so). The trick is remembering to remember ha ha...

School starts tomorrow... I welcome the distraction but I am so not ready! Wish me luck. I will most certainly keep you posted. You will likely see me on this forum a bit more...

Take care and I hope you have a wonderful night - Thank you again for going through so much trouble to type out all this information for me. It's very much appreciated!

Hi Catfish, It was 1996 that I actually got rsd-the only thing I was given was pain medication-possibly anti-inflammatory med. Then when I was diagnosed in 2002-the neuro started me on neurotin. That was gradually increased as spread and the spasms, electric shocks etc. Then cymbalta was added as well as lorazepam along with ambien and increased vicodin. My 3rd neurologist oversaw my treatment 6-7 years. He changed dosage, but stayed with those meds until he decided to change from neurotin to lyrica. He also changed from cymbalta to mirtazapine. Then in June 2011, I started reducing doses and in about 4 months went off all meds except my blood pressure, heart med (reduce heart rate) and mirtazapine. I had a heart attack in June 2011. I did this under Dr. supervision.
Hope you get some good info from support group people there in Portland. I would think it's possible they would know the 'most known' drs in the area.
Wish you well in your nursing degree. How is your foot/toes/leg? Are you still getting some symptoms in your right foot? How is your touch sensitivity? I don't have major swelling, but still use epsom salt in bath.
Take care, loretta

Hi Catfish, just wanted to add that there is an excellent post on January 31,2013
about Dr. Swartzman and crps. He is a very well known crps specialist in Philadelphia. He did the trial ketamine studies here at the Mayo Clinic years ago along with 4 other drs. a friend of mine was their assistant.
It's lengthy but good. www.edsers.com/uploads.rsd.pdf Take care, loretta

Hi Catfish!

I was diagnosed with CRPS 14 months ago. I go to Dr. Vladimir Fiks at Advanced Pain Management. He is great. After my first visit, he had me set up with epidural, steroid injections, nerve blocks... PT, surgical center, and doctor's offices are in the same building by 26 and 217. Feel free to email me if you want to talk, sagesmudger AT gmail
~Amanda

Hey guys,

Sorry I've been off the grid for a while. School started and I'm completely exhausted. Clinical rotations start next week and I am a bit worried. I'm scheduled for multiple 12 hour shifts back to back... Fingers crossed that I don't keel over!

I'll check out the article you posted. My insurance does not cover the infusions, however.

Loretta, did the meds even help? It sounds like they only made things worse... To answer your questions, I don't really experience touch sensitivity. Sometimes I have mild throbbing or aching pain in the sesamoid area when I'm off my feet, but mostly I feel pain while walking (when bending and/or putting pressure on the big toe joint). The biggest issues right now are the sympathetic changes including sweating, redness, warmth, and coldness, etc. When the sympathetic changes flair up, the pain increases and my feet feel horrid. The neuropathy and the burning sensations have mostly gone away since I started moving the joint and/or going to acupuncture twice a week. The pain and the vaso changes are still present though... I'm not sure what to make of it to be honest.

Saw the ortho doc last week and didn't really get anywhere. He recommended physical therapy, etc. He also gave me the option of getting a bone scan, an MRI, and/or a CT scan and I said sure - so we're going to explore that rout. I'm not sure what I'm hoping to find though...

My podiatrist wants to do a posterior tibial nerve block via injection next week, but I'm nervous to allow it. One article I read said never to do an injection on an RSD impacted limb...

BTW the individuals listed as RSD supporters were not helpful.

Amanda, I'll send you an e-mail. THANK YOU!

I hope all is well. Thank you for serving as a source of support!