I had an accident where my motorcycle fell on my knee in Oct. 2011. By mid-Dec. I fired three Orthopedics and four PT's by natural selection of incompetence. I will say that I am a strong advocate of not messing around with unhelpful people, especially one's who have no clear plan or one's who get distracted by unimportant things (like Oxycodone prescriptions when we haven't even established care - I live in a drug area but I have no history of any addictions)

I have a major concern about my blood pressure and heart pains. I am not yet 40 with a fitness background before my accident. I have always been sensitive to changes in elevation and have noticed an increase in my heart rate being less stable. Does anyone have any experience or knowledge of the most current treatment to stabilize this as I am expecting to have my first pain clinic appointment mid-June.

I am in PT twice per week, the CRPS does affect me in other areas than the injury site, I have psychiatric support, neurologic support, counseling, swim an dwalk as often as possible. I work from home using a bed since the accident as the leg does not return fluid well when sitting in chairs. I also have extreme agony when the fascia is challenged. My hope is to learn a method to keep my heart more stable or find more information on the link between CRPS and the supporting evidence of heart affect.

Also I am traveling overseas in May and wonder if anyone has any experience with calling the handicapped support through the airlines? I know I cannot fly 10 hours with my heart above my leg and I will need to move around frequently. I will NOT be affording first class

Any input welcome!

Thank you.

I can definitely empathize with wanting to return to a productive life as soon as possible! I am new to the forum but have read many sites widely reputable online and caution that if you do not research extensively this procedure you may go well on your way to taking twenty steps backwards and causing yourself undue distress.

From my readings at the NIH, NNIH, Netherlands research, Mayo Clinic and the likes any surgical procedure or puncture of any sort should be approached with extreme caution. Even the useof a standard needle should be substituted with the tiniest gauge possible.

I agree with others that it is wise to seek more information about the CRPS experience the surgeon or physician holds directly and research, research, research because this is a very complicated syndrome that mobility and pain management guide recovery hand in hand.

I call it the 'drama queen' response, if my body experiences the smallest of stimuli it doesn't like (standing near a spaceheater) it will flare in to 'drama queen' mode and feedback as though someone has torched my leg!

Conversely, I have also seen it go from incredibly red hot and burning to absolutely no response within minutes when I am pondering something extremely difficult inside my mind (research, a puzzle, imagining how to walk a certain way or step).

The neurological component of this should be foremost on the physicians mind, treating the source does help but the brain works in mysterious ways. Be careful! Good luck to you!

Hi all,
After 2 months of intense pain, swelling, discoloration etc. following foot surgery, my doctor finally diagnosed CRPS using data from an MRI. I am currently taking Lyrica, which seems to be helping (at least I can sleep now. I have had a five pound in one week weight gain, while eating healthy food.
So glad to have found this forum, where everyone "gets it" about CRPS. My doctor told me she had only seen one other case in her 17 years of practice.

Came kicking and screaming to register here- self-imposed kicking and screaming. Coming to terms with my diagnosis and future with CRPS. Tried denial even while doing treatments. My story- In May of 2011, I stubbed my toe. Nothing major. Few days later it wasn't better. Went to a walk in clinic, had unremarkable x-rays but they buddy-taped my toes in case. Week later, still not better so saw an orthopedic MD. He thought I might have a subtle fracture & continued buddy taping. One month later hurt my forefoot again. More unremarkable x-rays. Still buddy taping and ortho tried a post-surgical shoe. Another month passes and still in discomfort. Ortho orders MRI and he was very surprised with the results- torn ligaments, turf toe, etc. Into an aircast 24/7 for a month. Still not better. Truth be told my turf toe wasn't bothering me at all until I'd been in the air cast for a bit of time. The turf toe injury was pretty severe (grade 3). Referred to an ankle/foot surgeon because of lack of progress. 2 more months in the aircast until the surgeon had an opening for me. He took the aircast off and put me in my shoes with a metal plate inside my right foot. F/U appt. with surgeon in 1 month. Couldn't wait that long. At the end of 2 weeks, I was dragging my foot. Unable to even lift it. Back to surgeon. He immediately noticed the blueness of my foot, said we were lucky we caught it (CRPS) so quickly and referred me to a pain anesthesiologist for LSB. It took another 2 months to see the pain anesthesiologist. And yes, I tried begging for earlier appts and was on waiting lists for both my 2 month wait with the ft. surgeon and the pain anesthesiologist. Pain anesthesiologist doubted I had CRPS because I didn't have allodynia. On my way home, confused about what was going on with my body, my "da" moment. I had lidocream oint. on foot so didn't feel his light touch. He knew I was using lidocaine. Note to self, think for oneself and don't rely 100% on specialists. Had first LSB but the temp of my foot didn't even register. 3 days later, I was feeling a little better so they scheduled a 2nd LSB for 1.5 wks. later. That one actually saw an increase in temp. of my foot but absolutely no pain relief. Terrible experience during the surgery- I woke up during the procedure, felt the needle, saw the fluoroscopy screen in action. Actually felt much worse next day than ever- anything that had pressure on my body, bed, sheets, etc. caused pain. So much for lacking allodynia anymore. Saw the pain specialist's NP who said my symptoms were more like MS than CRPS and there was nothing more for them to do except refer me to a neurologist or rheumatologist. Said if the pain didn't go away, they could refer me to a partner who could implant a stimulator in my back. (So confused as I'm sure many of you have experienced). Next week, back to my ft. surgeon for f/u per pain anesthesiologist's rec. Ft. surgeon said again that he felt I had CRPS and couldn't operate on my ft. because it would only make things worse. He got on the phone to my pain anesthesiologist. Pain anesth. said "wires were crossed, noone in his office would tell his pts. they have MS" and I needed to make an appt. to clear this up. Saw him again week later. Pain anesth. said he didn't believe I had crps because my symptoms didn't fit crps 100%. Symptoms were- history of injury, excessive pain, my joint was beginning to lock up, my foot was much colder than other foot and quickly turned blue with touch or exposure to air. Told me I should follow his nurse practitioner's advice and see a neurologist. Saw a neurologist out of state who spent a full hr. talking to me and examining me. He confirmed CRPS and adjusted my meds. Ordered aquatherapy (had been on PT) and told me to call and let him know how things are going.

How are things going? I need to call my neurologist! The neudexta he put me on hasn't seemed to change anthing. He toid me I could increase the dose of dextromethorphan in the Neudexta by taking cough syrup DM. That way I would get more dextromethorphan but no more quinine. So started taking cough syrup DM also. Also on Cymbalta, Alprozolam, Tinazidine, MVI and lidocaine patches. Neurologist does not want me to have a spinal cord implanted TENS unit since I have sympathetic independent pain. He told me he has more tricks up his sleeve.

My disease seems to have moved on so quickly compared to many I've heard of. My arms and legs cramp up frequently, the wind on my skin causes the burning. I have pain up my right leg that I attribute to irritated nerves because the pain follows a very distinct, narrow route. My nails are changing in texture. I'm having pain at the back of my neck that causes headaches. Major flare last weekend (Can I call it a flare if I have continual discomfort?). I cried all Fri. night silently praying to anyone I knew who has already passed to come pull me to the other side. Spent Sat. in bed. Learned here that it was probably from the full moon. Out of the blue, while walking, I have sharp pains in my toe that cause me to gasp in pain. Right ankle is stiffening up. Having trouble lifting things I used to be able to lift. (Heavy sigh- that's all I can think of that's causing pain because my mind is shutting down and blocking anymore thought on my symptoms.

I told my PT I didn't want to look at my foot. (He had started me on mirror therapy). To see my blue foot is upsetting & makes everything worse. He told me I have to face my disease. (another heavy sigh).

Everyone in my family dies in their 80's & 90's from heart attacks or strokes. That was my plan too- heart attacks are a rather quick way to go. I didn't exercise as much as I should have, I could lose some weight, and I love fried chicken. I'm the perfect candidate to die of a heart attack like everyone else in my family- at least 30 yrs. from now. Why did God throw this monkey wrench (crps) into my plans?

Question- do many of you have a pain specialist AND a neurologist? I have an internist who is supportive but not very aware of crps. I also have a psychiatrist who wants to be involved with decisions made on my behalf but none of the other specialists have ever consulted with him despite my informing them of this and providing his contact info. Have to keep him in the loop by myself. And I have the neurologist in another state. The pain anesthesiologist's nurse practitioner told me they couldn't do anything else for me and signed off on my case. My foot surgeon has also signed off because I'm not a candidate for surgery. I also have my PT's.

When I first hurt my ft. I told the ortho that I had a fractured hand yrs. ago that wasn't diagnosed for a couple of months and then only by MRI. I had seen all the physicians including a hand specialist for that injury but because of the delay in diagnosis, I now have arthritis in my right hand. I told my ft. ortho that I wanted to do as much as possible as quickly as possible with this injury so I wouldn't have arthritis in my foot. So I do everything I was told to do and what happens- no arthritis but crps. Oh, could I go back and request arthritis instead? Pretty please?

My new motto is "Life is a four letter word". Having a hard time emotionally with this as I'm sure all of you have. I don't want to be a burden on my family. I know being educated about one's disease is important but the more I read, the more I don't want to know. Cry silently to myself because I don't want to upset my husband.

I am SO sorry to hear everything that you have been through. Having been bounced around by doctors myself I can definitely understand how frustrating that is...especially when you continue to get worse and worse. The immobilized my ankle in the beginning too and had me icing it prior to the RSD diagnosis and I believe that contributed to making my RSD worse faster since immobilization and ice are two of the worst things you can do for RSD. It is absolutely unacceptable that your PM doctor would write you off as not having RSD because you don't have ALL the symptoms...clearly he doesn't understand what RSD is or how it works (which unfortunately is way too often the case). I am so very sorry.

Educating yourself IS very important though. I know it can sometimes sound hopeless...but it isn't. They are coming out with new treatments all the time and remission is possible so don't give up yet. Keep fighting. You've mentioned that the neurologist doesn't want to do SCS but there are 2 treatments you didn't mention that I think are definitely worth looking into: tDCS and ketamine. For more information about tDCS pleasae read this thread, as I think you will find it very inspirational and hopefully it will give you hope like it gave me that it may be possible to have a life without this constant brutal pain:

http://neurotalk.psychcentral.com/thread160980.html

One of the best things about tDCS is that it doesn't come with the risk of spread like many other, more invasive treatments do. I just started a few months ago with this treatment and am over the moon with the results. I had spread after a LSB so this was a really appealing treatment for me.

As for ketamine, I definitely suggest doing a search on it as many patients have gone into remission. It is expensive and has risks, but it also has a track record of good results and may be worth considering. You also might want to check out the Ketamine Klub on facebook as there are many there with personal experiences that they could share with you.

Please keep fighting...life can get better if you fight for it. I know how hard that can be but things will never get better if you give up. Take care...I really hope things start to get better for you soon.

Hello everyone,

NJ, PCOS Lady dx'd 2003 with PCOS, Metabolic Syndrome, IR - Insulin Resistance, PreBorderline Diabetes, Rosacea ... Hypertension comes and goes depending on stress level...

All my PCOS symptoms are minor... My whole life i assumed they were normal til i went on Glucophage XR and many symptoms went away! I felt whole with my hormones in line...

RSD is popping up in women with PCOS now...
~ The levels and duration of pain you experience is horrid!
~ I'm surprised research has not proven the root of it all by now...

RSD was cured in a woman diagnosed, by a specialist, with a Epsom Salt bath a month later... She was magnesium deficient...
~ Makes me question if doctors are checking mineral and nutrient levels ...
~ Iodine & Magnesium deficiencies cause so many medical conditions!

I am a firm believer in having a hair sample analyzed for what all your body has and is lacking... A base line to start from...

I'm reading and gathering knowledge on RSD...

My blogs are enlightening, informative, research, forums, groups, blogs, 1st hand experiences are all crucial in helping others in their (PCOS, RSD, LUPUS, CELIAC DISEASE, FATIGUE, ABUSE, MISDIAGNOSIS, etc...) Journey to a better lifestyle...

FYI: Parasites cause many medical conditions too! Many go undetected and are never checked for since Quest and Lab Corp only check for 4 types! There are thousands+ known to man! IBS, anyone dx'd with it? Most likely it's parasites!
~ Parasite Testing site
~ Cure Zone site

Symptoms count ~ Your medical history counts ~ You know your body ~ You are in control of your body ~ Knowledge is POWER!

Christie

Hi
I'm am new to CRPS. My daughter was diagnosed just under two months ago so I have spent a great deal of time reading up and continuously being shocked at what I have learned. I had never heard of CRPS nor had I known anyone who had it (or at least was never told).

Very quickly, my daughter is 13. She broke her leg 8 month ago. It didn't heal in the expected time frame. She had considerable pain....mind you it was a bad break (spiral into the tibial joint at the ankle). She also blew out her knee and hip at the same time. Was told we wouldn't worry about those other injuries at the time because she had to rest for the fracture to heal and hopefully they would resolve themselves. The hip is much better but not the knee. Anyways...I'm jumping ahead. 6 months post break, her pain skyrockets. She is waking up every night, her lower leg and foot are swelling, they are cold and turning blue and purple. The Dr. identified it immediately. He prescribed Gabapentin 900 mg and Elavil 225mg. Of course, I thought he had gone insane with those kind of doses for a child. Told me to work up to them. It wasn't until after I read up on CRPS and spoke to friends in the trauma field that I relented and agreed to medicate her.

The pain is better although she still does wake some nights from it. They tried cortizone in the knee and guess what? The ankle area flared up!
Just continuing with therapy. Tried some anti inflamitories but they are killing her stomach. She is gaining considerable weight from the other meds as well.

I am terrified for my daughter and what her future will be like if we don't get this under control.

Any suggestions and advise is welcome. Also, just curious....does CRPS elevate pain in other parts of the body? For example, she has been suffering from a sore throat this past week. Most likely a virus. But she seems to be in more pain with that than what is normal. Any relation?

Thanks and God Bless all of you who are suffering

I'm very sorry to hear all of this. The good new is that children have the best chances at remission...so stay hopeful on that front.

From everything that I have heard, I think that you should look into getting her into a hospital program specifically for children with RSD. I think there are some Children's Hospitals and maybe the Cleveland Clinic that I have heard of. If you do a search I am sure you will find some. I think these are great because they focus on the therapy and less invasive forms of treatment rather than what some docs do which is jump into blocks and surgery and stuff. The physical therapy is SO important and also to be in a program specific for those with RSD. The generic outpatient physical therapy is often not enough.

As far as other pains throughout the body...it's hard to say. I CAN say that when you have RSD the pain is very intense and you definitely have more awareness of your body and the pain levels. So maybe that's why she seems to be more sensitive to the sore throat.

You want to try and get this under control as quickly as you can because the longer you wait with RSD the less likely the chances of remission (but it still does happen). I would look into hospital programs first I think (maybe your doctor even knows of some good ones). Even if the programs require travel...it will be worth it if they can put your daughter into remission. Other than those I would focus on the physical therapy and also recommend trying tDCS (this is a non-invasive treatment which is why I would recommend it early on). There are also mirror therapy, blocks, ketamine, etc that you could look into down the road which get progressively more invasive. You want to make sure you educate yourself fully about any treatment options before agreeing to them. Many carry their fair share of risks and you need to weigh those risks vs the possible benefits and success rates of each treatment.

Take care and feel free to ask as many questions as yout need to. There are several moms on here who have children with RSD, as well as some younger members who could also answer some questions for you I would guess. We all know what it is to live with this monster called RSD and we're always happy to help and share what we can. Best of luck to your daughter...I hope she finds relief soon.

Dear Scared Mom,

I am so sorry to hear about your daughter. I am very familiar with your
feeling of fear when it comes to RSD and a child. My adult daughter has
Rsd as well and although she is an adult there is no age cut off date when
it comes to mothers and that protective instinct we have for our children.
There has been many a time as I tried to educate myself about RSD I would
think I was truely living a nightmare and my fears would become so intense
I would have to put it all aside and take a breather. However as time passed
I was able to quickly take up the search for solutions.

Both you and your daughter will get through this. You will get through this
through the power of the love inside you. Each day that power and
confidence will grow. Meanwhile Catra 121 gave you some excellant
advice. I do not know the background of the Docs now treating your
child but programs in various hospitals who work with Children who have
RSD are a plus. You have two good things going for you, the high rate
of success with children with RSD and a fairly early determination. However
time is of the essense.

Joydee

Hello,
I would like to introduce myself to the community. I was officially diagnosed with CRPS yesterday. I am so happy to finally have a name to this monster. I have been suferring with this for close to 9 months already. It all started back in September 2011, I had severe knee pain and lost the ability to walk properly. I went to visit an orthopedic and we did some test including an MRI and nothing was detected only a miniscus tear and broken cartilage. We decided to have surgery to repair it, that was done in Janurary 2012, little that we knew that it will get worse from this surgery. I have been in extreme pain, swollen, muscle trembeling, temperature changes, insomnia and using crutches ever since. Severeal months ago the ortho DR was a concerned becasue I was not healing properly. More test were ordered MRI, CT Scan, Bone Scan, Lots of Blood Work. All test were normal with the exception of MRI and CT. They showed damage to my pattella, femur and tibia. I was sent to and ortho oncologist and rheumatologist. After carefull review of my history and the sequence of events it was concluded that I have CRPS. Yesterday was the first time I took any meds for the pain, and let me tell you it was Awsome to have a little break from all this pain and suffering. I know the jurney is long and hard, but I have faith in GOD that he will give all the stregnth that we need to continue foward.
Thank you for reading.