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Posts (36)

Apr 25, 2019 · RSD/CRPS in Brain & Nervous System

Hi Melissa @bikerchicl . I cannot say for certain but I believe that the pains that I am getting are CRPS related, as nothing has happened to me and I have had many attacks. Although I must say they are increasing, in both length & pain. In your case, I would recommend that you do whatever you need to do to in order to find out what the pains you are getting are related to. You need your peace of mind.
In my case I really don't care if I live at this point, so if I have a heart attack & die so be it. My kids are all grown and my husband died almost three years ago now from cancer that we didn't find out about until it was too late. He died six weeks after his diagnosis! He was my caretaker before he got ill. Now I am finding it harder & harder just to perform menial tasks. I tend to fall now several times a week, including a big tumble down the stairs on Easter Weekend which I am still feeling the affects from. Frankly I am surprised that I didn't break anything, although I do think it has increased my overall pain .
I really don't know where to go from here. I need help and cannot afford to pay and the government does not provide any assistance to direct me to someone who can. I am lost and I don't think that it is even worth the effort any more. I have done the ketamine infusions, turned down for SCS surgery and am on the verge of them taking away some of my meds due to the Opiod Crisis of course!!!! I could go on and on. Honestly, the bottom line is .. my kids didn't want to help look after me so one moved to a whole other province and the other moved out without ever calling, texting or seeing me ever since! I have no purpose, my life has no meaning anymore and I have no quality of life at this point… I have been putting off going grocery shopping for three days now because I just cannot seem to push my body any more to do this task, which is often the most arduous of them all. I need to go my pain in my hands and arms is increasing due to the typing and my legs are getting worse now as well. .

Melissa, Although, it is encouraged that people discuss via the forum as that really is the way folks can share and learn from each other. I do understand that sometimes there may be things that you are not comfortable in communicating to a group of strangers (although that is often the reason people feel so free to share). I will send you a private message Melissa so you can discuss anything that you do not feel comfortable discussing with the group as a whole. Regards

Apr 22, 2019 · RSD/CRPS in Brain & Nervous System

Dear @barbbie , when you are speaking of the "fluctuation" or the pain moving from one area of your foot/leg to another is this within minutes, hours or days of each other? In my experience over the last almost 11 years now of having CRPS the pain definitely can fluctuate. It can also continue to expand to other areas of your body. In addition, something that you won't see amongst many of the references to the nerve pain – is the fact what that really means is that, this means ANYWHERE you have nerves in your body, you can experience the pain of CRPS….This means that the pain is not just limited to the legs, feet or arms. For example I often get pain in both of my hips as well as my heart (which I have to tell you, feels like I am having a heart attack when it decides to rear its ugly head there!!! Usually for the next 20 minutes to half hour I suffer and often wonder ….Am I having a real one this time?…..At what point should I decide that the pain has gone on long enough and perhaps I should call an ambulance? I am not sure if I may not make the right call one day….meaning not making the call when perhaps I should have. I guess I may never know, especially if that happens!!!
CRPS sucks in many ways! Anyway, I hope I helped with your question.

Apr 22, 2019 · RSD/CRPS in Brain & Nervous System

In reply to @bikerchicl Go to the envelope icon at the top of the Mayo page, click on it and then compose your private message to the person via their Mayo posts name.

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?