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Posts (33)

Mar 5, 2018 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

Hi @bear420, I have CRPS in all of my limbs + face and most recently my eyes! My eyes too burned like crazy one day and I had to make an emergency Optometrist appointment. Initially they were able to see that my corneas were shredded from the dryness in my eyes. That was due to the medications and not part of CRPS. I now take special gel eye drops several times a day- for the rest of my life. The CRPS became clear when I had the pressure testing on my eyes and they were able to see that the nerves in my eyes were thinning.
Other problems have also made the Optometrist believe that I may be heading towards a diagnosis of Glaucoma as well!!
I already have lost all of my teeth due to dry mouth as well, again as a side effect of the drugs. I am a mess!!!!!!

Mar 5, 2018 · Ketamine Infusion in Neuropathy

Welcome @jdrhoads , I underwent Ketamine treatment a few years ago. It was on an outpatient basis for a period of 5 days. They setup infusions for me daily for five straight days. It did nothing for me at all. I begged for another round, however, they refused, saying they had many other patients that may benefit.
I am not convinced that five days is sufficient period of time to allow for changes. Just my opinion.

Feb 9, 2018 · RSD/CRPS in Brain & Nervous System

Hi there @pattiwaggin , You certainly seem to have a lot of the symptoms of CRPS that is for sure, however the I believe the greatest symptom of CRPS is PAIN. I have read plenty on the subject and I have never come across anyone or any literature where pain was not part of CRPS. So to you I would say, count your lucky stars, you are special. However, knowing what I know, I would also say be careful
what you do not wish for……..it may just come true…..and trust me, you will wish you didn`t!! While the symptoms you are experiencing are certainly uncomfortable and annoying to you, when you add the level of pain that CRPS presence itself with, it changes your world like you never thought possible.
In case you are not aware, McGILL Pain Index describes CRPS/ RSD, as the MOST painful form of chronic pain that exists today! That is also why some have given the diagnosis a nickname of “The Suicide Disease”.
Even more so now that both Canada & the U.S. are on a mission to rid themselves of Narcotics & Opiods……Starting with patients!!!!
Doctors are being pressured to lower or take your patients all off of these types of drugs or they are in jeopardy of losing their licenses.. Anyone who really knows CRPS knows that, that is simply not that simple. and you are asking many of these patients to live with the most painful condition there is without providing known existing medications that would lessen it !! Additionally, this is without in many cases providing a substitute equal to that which is being taken away or a cure! Many patients with CRPS would rather die than be left in the kind of pain that CRPS leaves them in.
Doctor’s are afraid of losing their licences, while patients are afraid of losing their lives!!! But who asked them anyway!!!
I believe while the origin of some of the street drugs may have been through patients or some so called doctors, it has come way further
than that now. The majority of the drugs are now shipped into the countries or made in people`s garages. But no one is processing that fact.
The governments are using guidelines established by pain specialists to help regular GPs know how much to prescribe for their patients. However as the specialists were afraid of, the governments are using the guidelines as “law“
Finally, those patients that have been yanked off of their meds & do commit suicide without a note, but despite their families communicating (and sometimes even the patients themselves) telling the doctors what the results of that will be. Their deaths get lumped in with all of the other Opiod overdoses, even though that clearly was not the case. So no one is capturing the real impact that this initiative is having on actual patients needing pain meds ….FOR REAL!
Others are actually driven to the street drugs since they are given no choice when their medications are withdrawn!!
Again, no one is tracking or monitoring this!
I guess we are just another casualty on the War on Drugs!

Aug 5, 2017 · I survived suicide attempts in Mental Health

Hi Jim, thanks for thinking of me. I have not been on in a while even in some of the other groups. My health has been deteriorating more & more lately. I also just finished getting the last three of my teeth removed ( a result of having severe dry mouth, a side effect of my medications). I have been told that dentures for me will be approximately $30k!!! This Once again is due to the medications giving me dry mouth. Since I barely have any saliva my mouth cannot hold in normal dentures!! I need bone graphs & almost snap like things that hold the dentures to the top & bottom of my mouth. I am not sure that I have that kind of money to spend, especially on myself. I have had to get a lot of work done around my house & that is not cheap. I am also trying to stay in my house as long as I can but unfortunately it is a two storey so I am going to need an electronic chair to get me up & down soon!! The stairs are the hardest thing for me! Before I can do that I need to redo all of my floors (more $$$) not just because my house is almost 20 years old and the carpet is really due. Plus I can’t use my scooter on carpet. So far it h as been difficult doing an

Jul 17, 2017 · RSD/CRPS in Brain & Nervous System

Welcome @pfox,

I am 49 years old and have suffered with CRPS now for almost nine years now and unfortunately your daughters experience is very much
the way it goes for most of those that suffer from CRPS. There has been very little advancement in treatment for CRPS, especially considering
that it has been in existence since civil war times. At which time they thought it was all in the patients head. Many doctors still think that, despite the World Health Organization adding to the list of Rare Diseases in 2014. This was a significant win for CRPS patients as this then allowed for more money to be available for research!!

Currently you basically have three main things that you can try (beyond physical therapy, nerve blocks or surgical sympathectomy).

The first use to be the prescribing of opiods and/or narcotics for the pain itself. These often in conjunction with other medications meant to address the neuropathic pain such as Lyrica or Gabapentin.
Second is usually by way of SCSS (Spinal Cord Stimulation Surgery) This surgery places stimulating electrodes through a needle into the spine near the spinal cord, which provides a tingling sensation in the painful area. Electrodes may be placed temporarily for a few days in order to assess whether stimulation is likely to be helpful. Minor surgery is required to implant all the parts of the stimulator, including the battery, and electrodes under the skin. Once implanted, the stimulator can be turned on and off, and adjusted using an external controller.
Finally, the most recent (yet not that) is the use of Ketamin infusions. In which you go to hospital as in or outpatient and receive daily infusions of ketamin.
Both SCSS and ketamin infusions have not proven to be beyond 50% successful. Really SCSS is only a “distraction” not a cure.

As you mentioned with your daughter, in the case of medications which a lot of CRPS patients heavily rely on to help tolerate the excruciating pain just to get
through each day, this is now becoming more and more in jeopardy as the incidence of abuse in the country (including death) continues.
This will and most likely has already, resulted in more deaths in the CRPS community as a result of being denied their medications, which are the only
thing a lot of them have to help keep them from choosing death!
I myself have already been told by several doctors (when I was looking for a new GP) that they would take me off all of my pain medications immediately. This has resulted with me having to stay with a doctor that I am not that comfortable with. This because he knows that ALL of my medications were prescribed by a very knowledgeable pain doctor who happened to retire and left me without any referral.
Finally, my husband’s company changed Insurance Companies and the new company wanted all of my medical records to ensure that I had tried all other
medical treatments available to me beyond the use of the narcotics and opiods. Of course I was able to do that no problem (who the hell who has CRPS has not looked everywhere to find some kind of relief beyond just taking pain meds?? Since my husband passed away last year, I only have one more year of his insurance coverage then I have to prescribe to our government for assistance (since I survive currently only on a meak disability payment) My medications cost more than my disability payment even before taxes!! I am hopeful that it will go the same as with the insurance company, although I know that they expect everyone to be prescribed opiods within a certain recommended range that was established by a community of medical doctors familiar with pain. I know I fall beyond that range! So, I am frankly scared of the day that they no longer provide me with the medications that I have been taking for a number of years. I am also afraid of the day that medications that I take no longer provide enough pain relief, especially since I am at the maximum dosages that are allowed to be prescribed!
So I a can fully empathize with you and your daughter as well as many other CRPS sufferers. I really do not know what is going to happen. As I am sure there are those CRPS sufferers that have already had to take their lives due to being denied their pain meds. Most likely they have just been lumped in with All of the other abusers or pain addicts!!
It is hard enough to try and continue to Want to live with CRPS. I have often found myself trying to justify continuing to live. Frankly, the only reason I am now is because of my dogs. Once they are gone (if I have not yet bust through the threshold of my pain meds before that, which I am not sure that I will be able to make it much longer to get beyond that) I will most likely go to. It really isn’t worth the daily struggle in pain. Before anyone tries to judge, walk a mile in my shoes….ones that are embedded with razor blades and set on fire, while someone shoots darts into your legs and someone drags on your hips trying to drag you down. Then a lion claws at your thigh. Could you keep going with this happening day after day, year after year?

Mar 1, 2017 · I survived suicide attempts in Mental Health

Hey Jim, Yes I am still up, though acting drunk because I am so tired. I have some of the latest information regarding SCS surgery for you :

http://www.neurologyadvisor.com/interventional-pain-management/outcomes-in-patients-with-chronic-pain-may-be-improved-with-early-spinal-cord-stimulation/article/634701/

As far as being at peace with the transition. I am not religious Jim, though I respect those who are and I do understand what you mean. No further explanation is necessary. My only worry is if I do not end up dying and end up like a vegetable or with serious cognitive impairment. I have a DNR however, I am never sure if it will be respected. Out of misery is better than living like this. eh?

I am so glad that your surgery is going forward for you Jim. I will be your biggest cheerleader!!!!

Mar 1, 2017 · I survived suicide attempts in Mental Health

Hi Jim,

I have actually suffered with depression on & off since I was 13. Unfortunately, it is only now that they are really speaking about mental illness
and investment in our Healthcare System. The couple of psychologists that I saw were terrible, not to mention the fact that you had to wait for weeks in between appointments. My closest attempt was ridiculous. They had to bring in a doctor out of retirement in order to just release me….Nothing much else was done.
Frankly I know the end will come soon for me. I cannot handle my Complex Regional Pain Syndrome (CRPS) much longer. I am on maximum dosage for my meds. I know at some point the pain meds will no longer be effective for me. I already am experiencing this with my breakthrough pain meds. I started out only needing to take one 8mg pill when I experienced breakthrough pain and now I am up to 6 x 8mg. = 48 mg. and I am only prescribed enough for a maximum of 10 per day. So once I have one episode of breakthrough pain I do not have enough for a second or third etc. Not only is the pain getting worse, it is spreading throughout my body. I am not sure how much longer I am going to be able to get around with just my canes and scooters. My husband use to be my support and now I have none. My daughter, while not the best support she was the closest to me and she has now moved to Nova Scotia (by the Atlantic Ocean).
I already spend many nights crying in pain. Nights seem to be the worst. I speak to my husband’s urn when I can barely take it any more.
It is very frustrating as well when there are so many doctors that have never heard of my condition or don;t believe in it. Every time ( I have had to
be taken to the hospital by ambulance around 3 times in the last few years ) I get in the ambulance they ask me about my condition’s name over and over again. Then they get to the hospital and say the same thing to the doctors. They also are alarmed at all my meds. especially my pain meds. They treat me like I am some sort of a junkie and ignore me practically for hours. Before my husband would show up and be my advocate. I just am sick of having to endure living like this. I don’t even have anything to look forward to any more they are not working on any other treatments here right now and even if they were they won’t try the SCS surgery on me. Not to mention I do not have much energy to fight the fight any more. If the shoe were on the other foot I bet they would be on the operating table in a hurry.
Jim I am sorry that you are dealing with so much but please fight to get the surgery done. I am sure with the pain you are experiencing potentially off the table, it may not rid you of your depression but I am sure that it will lessen it to some extent.
Now it is my turn to be very tired and try to get a little bit of sleep or at least close my eyes to rest them.
Keep in touch Jim. Please.

Mar 1, 2017 · I survived suicide attempts in Mental Health

Hi Jim,

It’s been a while. I was looking for you before X-Mas. Wondering how you were doing. I just feel you and I seem to be walking a similar tightrope. I did not realize that you were waiting to have SCS surgery. That was my last and only hope to alleviate my CRPS pain. Originally I saw the Neurosurgeon who appeared to be really nice. Following a review of my file (I had, had ketamine infusion treatments a year earlier which did not work) & a few more questions and a physical assessment he had me get a MRI done so that he was prepared with a clear view of my spine. After this was done he said that we would set a date for surgery. Unfortunately, for me the process changed whilst I was waiting for my SCS surgery. As you mentioned, part of the new process here in Canada now entailed a psychiatric assessment amongst other things now stretching out the process and justifying more jobs etc. in an already stretched healthcare system!
Also unfortunate for me was the fact that the woman in charge of the new Pain Centre did not even believe in CRPS.
Long story short…I was denied the SCS surgery. I was told that I had something wrong with me but it was not CRPS (but she refused to treat me even though she acknowledged that there was something definitely wrong with me). She did not refer me any where or offer me next steps. This was ridiculous especially since we have public healthcare so there are no other options once I walked out the door. That particular hospital is the only one in our province that offers that surgery. Ultimately I went back to the Neurosurgeon since he had confirmed my diagnosis (he was probably the sixth doctor to confirm). He kept bringing up more things for me to do in order for me to have the surgery. Finally, I confronted him about it. I told him he was just playing games with me. One of the things that he said was that I needed to deal with my depression. I told him that the reason I was so depressed was because of everything that this CRPS has done to my life. He accused me of yelling at him and I said that I was not yelling, I may be getting loud though. So I apologized for that, but I got the feeling that he was just really angry with the fact that I dared confront him. As with many “brain surgeons” I believe he was a narcissist. I asked my family doctor for the report that came in from him and as I suspected he mentioned not only that I had yelled at him (of course no mention of my apology). Then even more shocking was the fact that the last three visits he had sent my family doctor reports saying that he denied me the surgery. I guess he expected my family doctor to say something, which he did not. So finally in his last report he entered a whole whack of lies that basically covered all of the acceptable reasons that a doctor was allowed to “fire the patient” . This would ensure I would not, could not go back!!!!!!
Three things have since transpired. 1). The head of the Pain Clinic retired. 2).My husband died and finally 3). My Neurosurgeon is in jail…..for killing his wife and shoving her in a suitcase, driving north and sticking the suitcase under a bridge near a river!!! Apparently, he was abusive to her… She was also a very well respected doctor. They had three young children, which I feel terribly for.
But I am so tempted to go and see him. Mainly because a few patients are down at the courts supporting him because he operated on them & changed their lives. Unfortunately, they haven’t seen the real him as I have. Although, I know that even if he had operated on me and it worked, I would be thankful, however I would NEVER support him…..He is more than likely a murderer.
I got to experience a little of the “other side of him”.

So Jim you see yourself being able to let some of that depression go if you are able to get the SCS surgery soon? Is it mainly rooted in the pain or is there more to it?
I will be your cheerleader and support Jim (maybe that will be some support for me….knowing that you will soon get relief).

Hang in there for us Jim!!! Plus hey you are going to have a new baby granddaughter soon. Is this your first?