husband just diagnosed with rsd
 

My husband broke his foot on Christmas day(6 months ago), He fractured it in 9places and tore ligaments and damaged nerves and tendons. He had to go to a and e 2 days ago with severe pain and swelling of his ankle and was told he has rsd. the doctor told us very little about this condition and said to look it up on the internet! We got a shock when we realised how serious this is. The doctor said there is very little can be done about it and gave him Lyrica pain killers. We live in Ireland and cannot find any support groups. If anyone has any advice or help about rsd and treating it we would really appreciate it as we dont know where to turn.
Thanks

You have turned to the right place....
 

Dear finrac...

I am so sorry for your husbands RSD diagnosis .. the pain is so real and very mean...I welcome you to our family here...You have found a very knowledgeable, caring group who will help you emensley... I want to say that all is not lost..please have faith in that the earlier intervention is found and preformed the better chance of pain control and even possbile remission... I recommend you both educate yourselves not only this site and also the RSDA website..as they have many questions and answers there...Please locate either an anesthsia or neurologists and a pain managing Dr. and never treat with cold..packs or ice, water...there are blocks, medicine and many things that can be adminstered..but first find a Dr, who has knowledge about our condition... And of course..come to us for morale support..lean on us..both you and your husband as you both will have questions and need a shoulder from time to time.... Welcome aboard.. I love my family here...please have faith and keep us posted...

Hugz, gentle ones, Kathy:grouphug::grouphug::grouphug:

cultivating local resources
 

Dear finrac -

I agree with Kathy 100%. There is no question that the first eight to ten months or so is the most important time to intervene, when the illness is characterized by neuro-autoimmune inflammation. In that regard, if you could get immediate access to a rheumatologist who could in turn prescribe with Infliximab, a "tumor necrosis factor-[alpha] antibody," commonly used in the treatment of autoimmune illnesses, it could be of great benefit. For just one article you could print out and share with her husband's physician, see, Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1 [a.k.a. RSD], Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151 (full text at) http://www.rsds.org/2/library/articl...teck_Rolke.pdf

Along with Kathy, I urge you to check out the RSDSA site: http://www.rsds.org/index2.html They have a particularly good page of articles written for lay persons http://www.rsds.org/3/treatment/index.html as well as a library of freely downloadable articles from medical journals around the world http://www.rsds.org/2/library/articl...html#Treatment

But speaking of worldwide searches, I just searched the "PubMed" data base maintained by the by the U.S. National Library of Medicine, National Institute of Health (NIH) at http://www.ncbi.nlm.nih.gov/pubmed with the search "CRPS Ireland" and came up with only one abstract, but it may be promising:

Ann Intern Med. 2010 Feb 2;152(3):152-8.

Intravenous immunoglobulin treatment of the complex regional pain syndrome: a randomized trial.
Goebel A, Baranowski A, Maurer K, Ghiai A, McCabe C, Ambler G.

University of Liverpool, Clinical Sciences Building, University Hospital Aintree, Liverpool L9 7AL, United Kingdom.

Comment in:

Ann Intern Med. 2010 Feb 2;152(3):188-9.

Summary for patients in:

Ann Intern Med. 2010 Feb 2;152(3):I48.

Abstract
BACKGROUND: Treatment of long-standing complex regional pain syndrome (CRPS) is empirical and often of limited efficacy. Preliminary data suggest that the immune system is involved in sustaining this condition and that treatment with low-dose intravenous immunoglobulin (IVIG) may substantially reduce pain in some patients. OBJECTIVE: To evaluate the efficacy of IVIG in patients with longstanding CRPS under randomized, controlled conditions. DESIGN: A randomized, double-blind, placebo-controlled crossover trial. (National Research Registry number: N0263177713; International Standard Randomised Controlled Trial Number Registry: 63918259) SETTING: University College London Hospitals Pain Management Centre. PATIENTS: Persons who had pain intensity greater than 4 on an 11-point (0 to 10) numerical rating scale and had CRPS for 6 to 30 months that was refractory to standard treatment. INTERVENTION: IVIG, 0.5 g/kg, and normal saline in separate treatments, divided by a washout period of at least 28 days. MEASUREMENTS: The primary outcome was pain intensity 6 to 19 days after the initial treatment and the crossover treatment. RESULTS: 13 eligible participants were randomly assigned between November 2005 and May 2008; 12 completed the trial. The average pain intensity was 1.55 units lower after IVIG treatment than after saline (95% CI, 1.29 to 1.82; P < 0.001). In 3 patients, pain intensity after IVIG was less than after saline by 50% or more. No serious adverse reactions were reported. LIMITATION: The trial was small, and recruitment bias and chance variation could have influenced results and their interpretation. CONCLUSION: IVIG, 0.5 g/kg, can reduce pain in refractory CRPS. Studies are required to determine the best immunoglobulin dose, the duration of effect, and when repeated treatments are needed. PRIMARY FUNDING SOURCE: Association of Anaesthetists of Great Britain and Ireland, University College London Hospitals Charity, and CSL-Behring.

PMID: 20124231 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20124231

That in turn led to the home page of the Association of Anaesthetists of Great Britain and Ireland http://www.aagbi.org/ along with their contact information:

21 Portland Place, London, W1B 1PY, England.
Tel +44 (0)20 7631 1650 Fax: +44 (0)20 7631 4352 Email: info@aagbi.org

Since they partially sponsored the study just mentioned, one thought would be to contact them for the names of anesthetists sub-specializing in pain medicine in Ireland.

That said, a better thought may be to directly contact one of the authors of the study, who in addition to being one of the leading specialists in the U.K. in the treatment of RSD, has chosen to make herself publically available, Candy McCabe, RGN, MSc., PhD. of the Royal National Hospital for Rheumatic Diseases, Bath, among other positions:

Tel: +44 (0)1225 465941 ext 349 or +44 (0) 1225 386259
Email: C.McCabe@bath.ac.uk
http://www.bath.ac.uk/pip/directory/profile/827314

Among other things, Dr. McCabe is a specialist in an almost magically impossible treatment, if initiated soon enough, Mirror Visual Feedback (MVF). For an easily accessible article on the subject, take a look at Body Perception Disturbance (BPD) in CRPS, Lewis J, McCabe CS, Practical Pain Management 2010 Apr:60-66 http://www.rsds.org/2/library/articl..._April2010.pdf For another, see, Mailbag: Mirror Therapy (RSDSA) http://www.rsds.org/1/publications/r...pring2008.html

(In fact, a "Folding Mirror Therapy Box" can be yours for the mere cost of £24.99 along with another £4.99 for "World Wide Delivery," as per the advertisement the RSDSA chose to post with its original link at http://www.reflexpainmanagement.com/inc/sdetail/176)

If Dr. McCabe's unit is unable to treat your husband directly, I would hope that she would otherwise be able to guide him into competent Irish hands.

Good luck!

Mike

Hi finrac, So very sorry about the RSD diagnosis. Sounds like he really did some damage to that foot. Lyrica is really a med for nerve pain. It's not a narcotic. Lyrica worked well for me in deleteing the nerve jerks, jolts, etc. rsdrx.com puzzles list is a great site to learn more. Dr. Hooshmand practiced 40 years in Florida on RSD. He is retired, but can learn a lot from reading the question and answers. RSD is an autonomic condition, meaning it affects the involuntary organs, blood pressure, both high and low, heart, lungs, circulation, immune system. It can and does spread, even with treatment. I got two long remissions, I believe because of physical therapy and massage therapy.
The right knowledgable Dr. is extremely important. Please research before doing any procedure. Pool temperature should be 86 degrees according to RSDSA. I found pool therapy kept me mobile, and physical therapy and massage therapy helped with desensitization.
I hope you find comfort and support here like I have. There is so much compassion and knowledge from various ones. Hope you continue leaning on us. One of your new friends, loretta with big and soft hugs:grouphug:

Hi Finrac,
Welcome to the message board !...we're united by this condition called RSD that has entered our lives without invitation!!
I did a search and found a website out of Ireland called chronicpainireland
www.chronicpainireland.org

Though the topic is general, I think that you might be able to connect with others who have reflex sympathetic dystrophy/complex regional pain syndrome RSD/CRPS

I'm so sorry your husband endured such a complicated injury last December.
The sooner an accurate diagnosis is discovered and the quicker treatment is begun, there can be possiblility for a positive outcome!
I hope you find some friends and resources close to home...but you have found many, many friends here on the message board!
hugs to you and your husband, :hug:
Hope4thebest

Hi finrac, welcome to this site.

My husband also was diagnosed with RSD in August of last year. His is in his hand where he cut two nerves with his table saw. He was fortunate that his doctor diagnosed him as soon as his hand came out of the splint.

Others on this site are FAR more knowledgable than I am, but my two cents is to get him into physical therapy. He should try to use that foot as much as he possibly can. The therapists can also give him exercises to do at home.

My husband had three nerve blocks and took large doses of neurontin for several months. He eventually weaned himself off the medication and insisted the nerve blocks didn't help and refused any more of them. I made him soak his hand in epsom salt water every evening, we did his PT exercises together, and he took NAC three times a day, plus a multivitamin and an ibuprophen every day, and rubbed a 50% DMSO compound on his hand in the evenings.

Something in there somewhere, and maybe a combination of everything, has put him into at least a partial remission. My gut feeling is that the movement had as much to do with his remission as anything. He has really worked hard on his exercises and he continues to do so. Right now he has no pain and takes no medication but the skin on his fingers is still a little shiny and they are sometimes cooler to the touch than the ones on his other hand. Other than that, he is symptom-free and I thank God each and every day for it.

I still come to this site every day to keep up with current treatments that others are trying. You never know what the future holds and I remember well that helpless feeling of not knowing what to do or where to turn when we got the diagnosis. I want to be at least semi-prepared if this thing ever raises its ugly head again. I wish you and your husband the very best of luck in dealing with this. It is definitely a life changer, even in remission. The people on this site are a fountain of information and they are soooo willing to share. You will get all kinds of advice that you can trust and believe in.

fmichael, you are the KING of CRPS research. You find the most amazing information out there. I am in awe. Picture me genuflecting.

The info about MVF is particularly interesting to me because part of my husband's exercise routine includes him moving the fingers of his good hand in tandem with the fingers of his injured hand, making fists, flexing the individual digits of his fingers, etc. Sort of a MVF without the mirror. The physical therapists started him doing this almost from Day 1.

I don't know how or if this helped in his recovery, but as I said above, I believe that exercise played a big part.

Rise. ;) Seriously, I am thrilled to hear that PT worked so well for your husband; I just wished that they used MVF in the US.

What I had been told is that the economies of scale aren't there: it's too expensive to train someone who isn't gong to be doing it full time, and there just isn't the demand for it. But what your post made me realize is that it might make sense to train a physical therapist, where he or she can be gainfully occupied when not using the procedure on patients with acute CRPS. (Sadly, Dr. McCabe has written that the therapy - meant to trick the brain - no longer works once actual cortical reorganization has set in.)

And you are absolutely correct about the importance of exercise in general, even if all a patient can tolerate are stretching exercises and perhaps massage. As I admitted the other day, I forgot about this, once my PT discharged me years ago where strengthening exercises were clearly making me worse, only to be reminded of it the other day by my old neurologist, when I brought up my increasing inability to control spasms without opening the Marinol jar. He had a point: I had been out of any sort of PT for years.

Live and learn, forget and relearn. The dharma/tao of CRPS.

Mike

Thanks everyone for your help and advice. My husband was at physio today and his pt is very good and has had patients with rsd before. She has explained a lot to him about rsd as we got very little information off the doctor at the hospital.
Thanks again, it is great to be able to discuss this with people who understand.:)

I am a big fan of DMSO and have added NAC to my regime of things. How is your husband doing now? :grouphug: