Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-07-2016, 05:02 AM #11
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What was wrong with your urine sample, if I may ask? Was it the Xanax. Odd, since you've been prescribed that medication.

5 weeks is still long.

Don't you have a primary care physician?

I'd go with the rheumatologist, going forward, and try and find a different pain clinic.

Hang in there! Knee pain is intense (I know).
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 10-07-2016, 05:49 AM #12
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Tuna,

It was a rheumatologist who helped me by sending me for X-rays. The podiatrist I was seeing at the same time "thought" I had RSD, but decided to "wait" a few weeks before sending me for X-rays. He also said he "might" give me pain help after a few more visits. He did diagnose me based on those X-rays, but I never wanted to see him again, because IMO he allowed me to suffer.

If a doctor thinks you have RSD there should be immediate action IMO. Doctors know the RSD pain is off the charts. Call the pain clinic and tell them what the rheumatologist said. They may try to see you sooner or send you to another doctor or send you to Aqua PT. Call around to see if there is a heated pool you can get into NOW.

Please do not use ice as Catra advised and also as she advised bathe in Epsom salts. I found the latter hard to do. I loved it, but getting in and out of the tub multiple times a day was way beyond my pain threshold and energy level. But go for it, if you can. epsom salt | r.s.d.ecoding

If you have swelling, Natural Remedy to Reduce Swelling - YouTube Using a specific washing crystal you can wick off excess fluid. I found this very helpful. http://www.carriagehousemedicine.com/knee_pack.pdf It does not help the pain, but it is my belief that removing the stagnant excess fluid allows the lymph system to get back in action to do its job, which will help heal the limb and prevent long term, irreversible damage to the skin, etc.

Please look up DMSO. DMSO Gel 1g [DM2] - $24.99 : PreventDisease.comThis helped somewhat, as did serrapeptase, but not enough to make the RSD pain bearable.PARC: Promoting Awareness of RSD and CRPS in Canada DMSO and Epsom salts/magnesium can be purchased cheaply through farm supply stores, if there is one near you.

Magnesium oil is great to have on hand. Wonderful for aches, restless legs and CRPS. https://attackofthecraps.wordpress.c...ow-i-love-you/

Medical marijuana is supposed to be helpful for pain. Also MJ oil. I have not tried either.Illinois Cannabis and CRPS

14 Ways to Relieve Chronic Pain | Lifescript.com

Avoid braces and anything constricting.

Please update us.

Last edited by BioBased; 10-07-2016 at 10:33 AM.
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Old 10-07-2016, 01:11 PM #13
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Hi Tunajon,

I am sorry to hear about your disappointing appointment with pain management. I am confused as to how you "failed" the drug screen if you have a legitimate prescription for xanax. I don't know that Pm doctors are typically managing their patients psychiatric meds. You'd think that they have patients with medications like xanax on board and being prescribed by other doctors. It seems strange to me that this prevented a consult.

I DO understand that they need to know about any and all prescriptions to avoid potential for addiction and to manage unsafe interactions. I also understand why they want you to wean off the xanax. Unintentional overdose and respiratory failure risks are higher in patients who take both opiates and benzodiazapenes.

I'm not clear on why you couldn't be seen to discuss neurontin or other non-opiate options or the possibility of local or sympathetic blocks if you wanted those. From here, that seems a little odd. Also what are you supposed to do about your anxiety Do they have therapists or prescribe anti-depressants? kinda strange...

I hope you are able to get what you need soon. If this clinic is not a good fit it may be worth trying another. I "interviewed" 3 PM doctor candidates before finally hiring one. The first two didn't make the cut. You should be able to ask about the clinic's policy for anxiety meds from other prescribers before committing time and resources to an appointment.

Also, does the rheum's consult mean that your patella is right where it should be or is it still off?

May tomorrow be a better day,
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Old 10-08-2016, 03:04 PM #14
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Quote:
Originally Posted by tunajon View Post
Thanks so much for each of you taking the time out of your lives to respond to me. I promise you that I will "play it forward" and share the knowledge that I am sure to gain along the way with others. However, right now I'm in a pretty bad state of mind. On Wednesday I went to the pain clinic I was referred to. I mentioned to the nurse prior to submitting my urine sample, that I'd fail the urine test. She asked why. When I replied, she said I'd receive a 'warning', and would need to have clean tests from then on. However, after providing the sample, she returned to the examination room only to state that the doctor wouldn’t see me. I was told that I needed to taper off the Xanax that I was prescribed by my physician, as well as have an otherwise clean test (which could be obtained in about four weeks...), in order to be seen. I was told that the doctor was actually doing me a favor, since if he wrote the results of meeting with me in the chart, he’d not be able to continue to see me. So, I have an appointment in 5 weeks, and must wait that long for the relief I hope he can provide. I certainly understand his reasoning regarding part of the reason I failed the test; however, I was prescribed Xanax for a reason…anxiety. Right now, I have more anxiety than perhaps I’ve ever had, and I cannot seek prescription relief to the extent my doctor prescribed. Today my wife drove me three hours each way to a rheumatologist, since I cannot currently drive due to knee pain. We got that appointment with a prominent doctor through a family connection since my local rheumatologist couldn’t see me until mid-November. He was fabulous and extremely thorough, spending about an hour with my wife and me. His conclusion was that I absolutely did not have any arthritic condition as the cause of my symptoms. He then asked us what we thought was happening to me. I said RSD/CRPS, as so many of my symptoms matched so closely to everything I’ve read about it. He looked quite serious as he said he thinks we’re “spot on”. He then discussed other RSD patients he’s seen in the past. He believes the post vasectomy pain could also be related to what I’m currently experiencing. If true, then I’ve had this for about five years, and the 9 months I was pain free post-orchiectomy was a remission of sorts. If so, then my age, and the length of time I’ve had this both work against me. Tomorrow I have an appointment with a neurologist, which is the specialist that I put the most stock in. My knee is extremely painful right now, after the exam, and after being in the car for six hours. Today was the day where this has seemed the most real to me, as I ponder my future – one where many of the things I was able to do seem as if they’re slipping away. I can’t drive myself, I can’t play with my ten year old daughter as I’d like, I can't keep up the yard, I can barely focus enough to work (even though my job does not require physical exertion, it demands tremendous mental clarity and the ability to speak clearly to groups about complex material), I need crutches to walk, and am in continual pain. I fear increased social isolation. Basically, I’m a bit of a mess tonight. I realize this comes in waves and this too will pass, but right now it’s not good. I’ll post an update after the appointment tomorrow.
There is no reason that you should be stuck unable to drive even though your knee is giving you these issues. Assuming your car has automatic transmission then all you need to do is have a simple set of push-pull hand controls fitted. They only cost a few hundred $s and are extremely simple to use. They don't require any special tuition or anything else like that. Everyone else can still drive the car using the pedals as normal with the hand controls fitted. They are a basic, very common adaptation for disabled people and have been around for decades. If you do recover, they can easily be removed. There is bound to be someone in your area who can supply and fit hand controls to your car. Google will tell you all you need to know about the controls available and where to go for supply and fitting.

Its possible to purchase various brands of temporary hand controls which can be easily moved between cars and are handy for e.g. using in rental vehicles but they are much more difficult and less instinctive to use, especially when you are new to these things so I really very strongly wouldn't recommend these for you.
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Old 10-09-2016, 12:21 PM #15
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Quote:
Originally Posted by Neurochic View Post
There is no reason that you should be stuck unable to drive even though your knee is giving you these issues. Assuming your car has automatic transmission then all you need to do is have a simple set of push-pull hand controls fitted. They only cost a few hundred $s and are extremely simple to use. They don't require any special tuition or anything else like that. Everyone else can still drive the car using the pedals as normal with the hand controls fitted. They are a basic, very common adaptation for disabled people and have been around for decades. If you do recover, they can easily be removed. There is bound to be someone in your area who can supply and fit hand controls to your car. Google will tell you all you need to know about the controls available and where to go for supply and fitting.

Its possible to purchase various brands of temporary hand controls which can be easily moved between cars and are handy for e.g. using in rental vehicles but they are much more difficult and less instinctive to use, especially when you are new to these things so I really very strongly wouldn't recommend these for you.
The hand controls are a good idea, but in some states you need to pass a driver's test while using them. Talk to your PT and/or state representative or senator before investing any money. Also find out about restrictions related to driving while using certain medications.

I am sorry for your struggles with diagnosis and finding the right doctors. Don't despair! Many of us have gone through this mess, but have found doctors and treatments that have improved our lives. Keep doing your research and be your own advocate.

Wishing you strength and peace.

Shay
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