Hey all, new member and found this site after being diagnosed. A little about me. I just turned 50 a couple of weeks ago, and very physically active still. I was into Bodybuilding when I was younger for many years, and up until recently still worked out 4-5 times a week. I'm into Road Biking, and occasionally Mountain Biking. I had a degenerated disc at L5/S1 for a long time, and decided to have it fused in September since it was starting to hurt more and more after anything physical. Surgery went great as far as the back is concerned. About a week after surgery, my Sciatic nerve hurt down through my hamstring,calf, shin and foot. At first the surgeon said it was normal and would settle down with time. For about two weeks the pain was so bad it was almost unbearable. Real life torture was about what I would compare it to. Eventually it all went away except for my foot. My surgeon was concerned and had me checked for Gout, and a blood clot, which both came back negative. He seemed to be baffled, but said try walking more and it should clear up. After 12 weeks I had a follow up, and he was stumped. He said by then it should be back to normal. My foot felt like Neuropathy, but stays swollen, with nonstop extreme tingling, and shocking. I can barely wear socks, much less shoes. Even socks are too tight. He told me that he thinks it's RSD and wants me to see a specialist, and released me since the back issues are fine. I have no idea how to proceed from here. First I'm scared out of my mind. I've read alot, seen pictures here, and terrified at how far this can possibly progress. I keep thinking it can get so bad that I will loose my job and can't support my family. I've been very depressed since finding out what I have. As far as what to do next, do I start with a Pain Doctor, or a Neurologist? I've read that taking action early can possibly result in remission, so I don't want to wast time. My first thoughts were to see a pain doctor, but then I started thinking that would just be masking the pain, and not really getting to the issue. I'm totally lost here. Can you all point me in the right direction where to proceed? I want to get on this as soon as possible.

See the specialist first. Either a neurologist or "pain doctor" make sure they have experience with CRPS. Treatment is different for each person but usually if it is caught early enough, it CAN be pushed into remission. With combo from Physical therapy, medicines, lots of things. Just make sure you're seeing a reputable Doctor!! Also getting your pain managed is KEY. CRPS worsens with lots of stress and upheaval, nice huh? Do some research into doctor in you area that KNOW about CRPS. That is vital..Good luck!!

Hi Rich, so sorry you are going thru this. No doubt, your surgeon referred you to a Dr. familiar with RSD. ASK before the appointment, if the Dr. is experienced with RSD. RSDSA is a national organization- you can go online and type in your zip code and find closest RSD support group. Call the group leader and find out who the experienced local Drs are. My RSD followed a surgery, but wasn't diagnosed. Following the surgery, got frozen shoulder. Went into physical therapy to regain use of shoulder. extremely painful, but after nearly 100 treatments got use of shoulder. Then the RSD went into other shoulder after I moved to another state. Started therapy again to regain use of that shoulder. (really was RSD, but wasn't diagnosed) Then it went into the hand of original shoulder. RSD used to be called hand -shoulder syndrome) A rheumatologist said I had RA. but I knew that wasn't right, so I eventually flew across country to a sports injury group of orthopedic drs. that I trusted and had been to before. (noted for treating olympic athletes) He thought it was RSD within seeing me in 2 minutes. Same day had me at nuclear bone scan for my hand at the hospital. started me on physical therapy next day and ordered a Tens Unit. Flew back to my state the following week and saw another orthopedic Dr. who comfirmed RSD and continued PT. Also saw a neurologist who did further studies and confirmed RSD. PT is very painful, but necessary to gain full range of motion if a limb is frozen up. Also necessary to desensitize the limb or body part. The PT people had me desensitizing my hand at home. Had me get several plastic containers and put different textures or objects in each one and run hand (or in your case foot) thru the textures. Like cotton balls, sand, coffee grounds, pop corn kernals, beans, etc. just get used to different things touching the limb. Does that make sense?
My hand was frozen like a piece of wood-no use at all in bending fingers. Eventually was able to partially bend fingers-it's like a claw. But sooooo grateful I can cut my own food again and type. Thats been over 10 years ago. It did go full body into the feet, legs etc.
My understanding is the sooner you get diagnosed the better your chances are for remission. Check into nerve blocks-some have gotten remission when they receive them early on. I was helped with the electrical shocks etc with neurotin and later lyrica. I no longer take those meds,, but I believe they helped me.
There is another website that I learned a lot from RSDRX.com especially under puzzles -which are 140 some questions about rsd from a dr. that is now retired.
Getting as much information as possible is important although scary. From reputatable sites like mayoclinic.com etc.
RSD or CRPS is a disregulaton of the sympathetic nervous system. Which is why the disorder often follows surgery or a traumatic injury or even such a small thing as a needle injection. Look up sympathetic nervous sytsem, parasympathetic nervous system, vegas nerve and learn how these systems work in our body. These systems regulate our body temperature, heart rate, blood pressure, etc. That is why we can be burning up, or ice cold, or fast heart rate, then slow heart rate, high blood pressure, or low enough to pass out. Our anxiety level is connected to these systems.
It's a lot to take in, but the more informed we are - the better we can make decisions about our health care.
This has been long, but hopefully in some way helpful to you. Let us know how you are doing- loretta

I suggest you seek out a pain management specialist first and attempt to get a definitive diagnosis. This may be difficult for you because you are only a few months post op after a fusion. A fusion would be expected to take a year or more to settle so its odd that your surgeon has washed his hands of you so fast. Someone else may be reluctant to do much including committing to a diagnosis except issue pain medication when you are so close to the date of your surgery.

It is always possible that there is pressure, scar tissue or post surgical rubbish in the area of the fusion which is pressing on nerves and causing these problems. It may be CRPS but these sorts of symptoms can equally be caused by pressure or irritation arising from a mechanical issue in your back. In that case it may be that there is something that can be done to reduce or remove the symptoms you have. Sadly, the only thing that back surgery is virtually never recommended for is reduction in pain - it will fix mechanical problems but is notoriously poor at reducing pain. You need to ensure that things are ok where your back surgery is concerned and I am surprised you have been discharged so rapidly. CRPS is a diagnosis that can only be made once all other more likely causes of the pain etc have been ruled out so it is important to find someone experienced to make sure that any other cause isn't missed given your recent surgery.

You need to find a pain management specialist who has familiarity with CRPS and not get too caught up in what you are reading on the Internet. The people who make good recoveries don't usually bother to post their experiences! I can't lie, it's a horrible diagnosis to have but wait and see what the outcome is before you get too caught up in the horror of it all.

You said you were worried about just masking the pain. People worry about this a lot. Unless there is a mechanical cause for your symptoms which can be relieved by surgery or PT for example, the best you can ever hope for with chronic pain is to mask the symptoms. For some people, the pain gradually goes away over time but medical science has no means of curing CRPS and most other chronic pain problems. Trust me, the drugs and most other interventions aren't actually that good at masking the pain. If they were, we wouldn't be posting on here! You are likely to still feel quite enough pain to know what is going on even with effective pain management.

I'm sorry your situation is complicated and difficult for you but I hope you find someone who can give you a better idea of what is going on soon.

Rich -

Hi and welcome to the forum.

For what it's worth, I was completely in your shoe - the one for the foot that can's tolerate the compression of a sock - in thee fall of 2001, perhaps 3 months after the onset of my initial symptoms. As it was, it was another 2 months before I would receive my first truly effective treatment - in my case a "bilateral lumbar sympathetic block" (an injection of local anesthetics, in this case close to the spine and performed under fluoroscopy) administered by a pain management specialist an out-patient O.R. setting - and we now know the sooner such treatments are administered in the course of the disease (ideally in the first 3 months) the better the outcome. Or should I say, far better the outcome. So if you could beat me to the pain management doc by a couple of months, that would be highly recommended.

And another therapy that's recently taken off is the use of "bisphosphonates" - something I've been on with substantial results for years, and which many believe to be the ONLY currently available treatment that is truly effective for CRPS. See, e.g., Treatment of complex regional pain syndrome: a review of the evidence [Traitement du syndrome de douleur re´gionale complexe: une revue des donne´es probantes], Tran DQH, Duong S, Bertini P, Finlayson RJ, Can J Anesth. 2010;57:149-166, 164 (“In summary, only biphosphonates appear to offer clear benefits for patients with CRPS.”) It is however contraindicated for anyone with kidney/renal impairment or in need of major dental work: tooth extractions, root canals, etc. But check out this result - in one of the top, peer-viewed medical journal in the world - when it was administered at a significantly higher than normal but once-in-a-lifetime dose to patients who had had the disease for no more than 4 months:

Treatment of complex regional pain syndrome type I with neridronate: a randomized, double-blind, placebo-controlled study, Varenna M, Adami S, Rossini M, Gatti D, Idolazzi L, Zucchi F, Malavolta N, Sinigaglia L, Rheumatology (Oxford). 2012 Nov 30. [Epub ahead of print] [ABSTRACT ONLY]

Abstract
Objective. Complex regional pain syndrome type I (CRPS-I) is a severely disabling pain syndrome for which no definite treatment has been established. The aim of this multi-centre, randomized, double-blind placebo-controlled trial was to test the efficacy of the amino-bisphosphonate neridronate in patients with CRP-I.

Methods. Eighty-two patients with CRP-I at either hand or foot were randomly assigned to i.v. infusion of 100 mg neridronate given four times over 10 days or placebo. After 50 days the former placebo patients were given open label the same regimen of neridronate.

Results. Within the first 20 days, visual analogue scale (VAS) score decreased significantly more in the neridronate group. In the following 20 days, VAS remained unchanged in the placebo group and further decreased in the active group by 46.5 mm (95% CI -52.5, -40.5) vs 22.6 mm (95% CI -28.8, -16.3) for placebo group (P < 0.0001). Significant improvements vs placebo were observed also for a number of other indices of pain and quality of life. During the open-extension phase in the formerly placebo group the results of treatment were superimposable on those seen during the blind phase in the active group. A year later none of the patients was referring symptoms linked to CRPS-I.

Conclusion. In patients with acute CRPS-I, four i.v. infusions of neridronate 100 mg are associated with clinically relevant and persistent benefits. These results provide conclusive evidence that the use of bisphosphonates, at appropriate doses, is the treatment of choice for CRPS-I.

PMID: 23204550 [PubMed - as supplied by publisher]

[Note: the information regarding the time of disease onset in the study population comes from the article itself.]

Currently, only the most well train pain management specialist offer bisphosphonates to CRPS patients. So if I may be permitted to pick up where Neurochick left off, in terms of finding a specialist, the easiest way of finding an excellent pain management specialist the easiest way to go board certified in pain management by the American Board of Pain Medicine (ABPM), the group which certifies most of the pain management fellowships in the U.S. What this means is that, in addition to a doctor’s residency, s/he took a separate one-year fellowship in pain medicine, and then sat for and passed an 8 hour written exam; they're serious people. To find ABPM certified specialists in pain medicine in your area, go to its Public Directory. You can search by geographic area, gender and "specialty of origin" - the field in which the doctor completed his or her residency.

That said, not all ABPM certified specialists in pain medicine do a lot of work with RSD/CRPS, in fact, most probably treat lower back pain more than anything else. So for what it’s worth, you probably don’t someone who completed a residency in Physical Medicine for CRPS. In fact, for RSD/CRPS a background in neurology is probably favored, with anesthesiology and psychiatry (or in the case of my pain doc, a combination of the two) coming in tied in close second.

Alternatively, the American Board of Anesthesiology (ABA) maintains a sub-certification program in pain management that also requires a 12-month fellowship following the completion of a residency, but in its case, a residency only in anesthesiology. While I am not aware of any search engine for doctors who are so-certified, you can determine the board certification status of any anesthesiologist by just by accessing the ABA's homepage.

And when you find a doctor, it's important that you do interviewing of your own at the first appointment. In particular, you will want to know whether the physician routinely provides "medical therapies for the treatment of RSD/CRPS, information that whoever is setting up the appointment on the doctor's end - or that person's manager - should know offhand. I stress this because there is another school of pain management that's based on so-called the academic school of thought known as cognitive-behavioral pain management, aka exposure therapy, aka stress inoculation training, aka cognitive processing therapy, aka dialectical behavior therapy, aka acceptance and commitment therapy ("there is no cure so just stop searching for treatments learn how to function without the assistance of medical or drug interventions"). FYI: while the aforementioned is coordinated largely out of the Department of Psychiatry of the University of Washington's School of Medicine, it plays at some other medical centers around the country, including the Mayo Clinic, and OHS in Portland OR.

You are looking for someone who employs multiple therapies simultaneously, such as physical therapy, pain medication, bisphosphonates and/or nerve blocks, as well as perhaps somewhat more novel therapies, such as "Mirror Therapy and Graded Motor Imagery" and/or extremely low power DC current and/or magnetic stimulation of the brain's motor cortex.

BUT, if what your hear instead is a discussion of implantable medical devices, such as spinal cord stimulators (SCS) or pain pumps, I would personally keep looking for another doctor. The bottom line on implantable medical devices being that while they are highly remunerative for the doctor, there is, for instance, little if any peer-reviewed evidence suggesting that SCS is effective in CRPS patients for more than three years: while there is plenty of evidence of too many people developing nasty side-effects along the way.

You are wise to be getting on this ASAP. Good luck!

Mike

Thanks Mike, that's a great deal of very helpful information! I see that I have lot of research ahead of me. Hopefully I can avoid a lot of wasted time and get on the right path quickly. I would love to get this in remission. My surgery was September 10th, so it's been exactly 4 months. I hope I'm not too late for remission.

Neurochic: i guess I should have explained more when I said my surgeon released me. He still wants to see me for the regular follow ups that are needed for the fusion, he just released me to return to work. Luckily I work inside at a computer. I am wearing diabetic shoes, kind like moccasins with no socks, and very soft fur lined. I work shift work, so most of the time I can take the one shoe off and prop that foot off when needed. Someone mentioned it seemed early to already be diagnosed with RSD already. Is it possible for the nerve to still be settling down, yet still present with RSD symptoms? My foot stays swollen, is bright pink, and constant pins and needles feelings. Sometimes I get random sharp shocks now and them, that are quick but sharp. I have all these symptoms, yet still kind of numb at the same time. That would be a miracle to me if that were the case, but with my luck it's probably not.

Rich, I've read and chatted with a few folks who showed signs of RSD but it turned out to be trapped nerves instead. As soon as those nerves were released their symptoms vanished. As mentioned by others the trick is to find a specialist who knows RSD/CRPS and this can be time consuming, in which it was with my wife's case, took 4 years for her. You could cut to the chase and check this group out---http://www.rsdhealthcare.org/ They have a good reputation but I believe they do not except insurance. So, I believe the way it works is you pay them, and if approved your insurance then pays you. I hope everything turns out roses for you and good luck.

jim

Rich -

No problem. If you give us your approximate geographic location, we might be able to recommend a good pain management physician in you area.

And regarding the possibility of nerve entrapment, while it's worth checking out, there is absolutely no reason to delay treatment for what is apparently CTPS in the interim! (It's not going to further injure any hypothetically entrapped nerve and may prevent a lifetime of suffering.)

One more quick citation you should be aware of, on the importance of getting on this on a timely basis, e.g., THIS MONTH. Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, Ackerman WE, Zhang JM South Med J. 2006;99:1084-1088.

Take care,

Mike

Mike, I'm in The Woodlands, Texas, just north of Houston, and south of Conroe.

RichS

It's always possible that you don't have CRPS. I am not for a second saying you do or don't have it - it's impossible to do that and you need to see a specialist who is experienced in the diagnosis and treatment of the condition.

As JimKing has also said, nerve irritation, entrapment and irritation can be wrongly assumed to be CRPS and can cause all sorts of painful and non-painful symptoms and sensations that look very much like CRPS. The fusion itself, the underlying damage it was 'fixing' and any nerves or other structures such as your lymphatic system that may have been affected by the rummaging around can all take a long time to settle and heal even after any source of irritation has been removed. Whilst they are being irritated and during any subsequent healing process nerves can produce pain, tingling, paresthesia etc while they are firing and trying to recover. Symptoms of redness and swelling can certainly occur without CRPS as a cause. It may well be something else so theres always hope!

That's why it's important to see someone knowledgable as soon as you can to try and get a definitive answer. As others have said, there are treatment options that you could start to pursue which won't do any harm even if it turns out not to be CRPS and you want to get on with those rapidly. however, if you have something like nerve impingement or inflammation it would also make sense to try and deal with that (if its possible) sooner rather than later. You could also find yourself going through some less than pleasant treatment options 'just in case' it's CRPS.

Why isn't your surgeon already recommending a pain management or other suitable specialist for you to see since he is, in fact, going to be continuing your post-op care? Id have thought he would know enough colleagues in the area that he'd be able to suggest someone he feels would do a good job for you and work well with him, especially if he suspects it is CRPS. Be careful that you don't end up in a situation where multiple specialists blame the other or try to push responsibility to the other for managing the carrying out (and the ultimate consequences of) any invasive procedures or medication regimes. You could just fall between two people, neither of whom wants to take responsibility for your case (or any errors that are made along the way).

I hope you can get a speedy diagnosis - that would seem the key thing to work on just now and then you can fill your head full of the horror of whatever that turns out to be!!