Besides expressive aphasia, oral axprasia, loss of coornidation and weakness with right limbs..i have started feeling a severe burning pain with pins and needles in my right hand when temperature rises or drops…i dont if anything else can trigger it..it showed up just last week…i know pain may bd controlled by meds….what im trying to figure out if the numbness (when im not feeling pain) will that ever go away.????..can meds give u back the feeling or does physical therapy help? ??

HERE IS DEFINITION FOR THOSE WHO NEVER REALLY UNDERSTAND WHATS GOING ON WITH THE PAIN AND ODD SENSATIONS. JOIN US. YOU ARE FAR FROM ALONE. UP TO 20% OF STROKEES END UP WITH CPS. ABOUT 5% ARE TOLD WHAT IS GOING ON BY DRS AND PROFESSIONALS, 5%FIND THE INFO ON THEIR OWN AND 5% SUFFER ALONE WITH NO IDEA WHAT IS GOING ON. THATSWHAT WE NEED TO CHANGE.

HUGS
MARY

SORRY ABOUT THE http://WWW.CENTRALPAIN.ORG LINK. ITS DOWN FOR UPDATING. JOIN THE DAILY YAHOO EMAIL GROUP.

http://health.groups.yahoo.com/group/CPS_ALLIANCE/>>


CENTRAL PAIN SYNDROME A DEFINITION 


A neuropathic pain with various names…..In an effort to get everyone on the same page the term we use is:

Central Pain Syndrome. We will often use CPS for short.


Synonyms: Also known as:

Central Post-Stroke Syndrome
Dejerine-Roussy Syndrome
Central Neuropathy
Posterior Thalamic Syndrome
Retrolenticular Syndrome
Thalamic Hyperesthetic Anesthesia
Thalamic Pain Syndrome


Central Pain Syndrome is a neurological condition. 

24/7 Sensations can affect us all differently, in different places on our bodies, and at different levels of pain and suffering.

Extremely difficult to diagnose:
Often sending the patient to many doctors to find one that believes in their suffering. Finding a doctor who is willing to treat and work to find relief for the person that suffers with this savage pain becomes a miracle in the mind of those that suffer.

Causes:
Central pain syndrome occurs because of injury to central nervous system…  CPS can be caused by stroke, multiple sclerosis, epilepsy, Parkinson’s disease, toxins, tumors and trauma to brain or spinal cord,  any diseases that eventually reach the central nervous system. 

Sensations:
It can be a steady, sometimes deep burning, aching, cutting, tearing, pressing, lacerating  mixture of pain sensation. 
Pain may be moderate to severe in intensity. 


CPS may be  described as:  
As weird sensations like Burning: “A chemical, not a purely physical burn” , bone cold,  wet sensations, tingling, a “pins and needles”, a ballooning sensation, throbbing, the feeling of a dental probe on a raw nerve, even metallic. 

Intense skin reactions:
1. Can accompany these symptoms, such as burning, stretching, tightness, itching, or a crawling feeling. 

2. CPS can be aggravated by any light touch such as the feel of cloth on skin making dressing an ordeal, as can the touch of a sheet or blanket. 
The touch of a loved one, may overwhelm the brain with the pain from CPS.

Intestinal reactions:
Gut pain, stomach  nausea and vomiting can be a part of CPS. 

Numbness:
The hands, feet, head, and trunk can be affected with a numbness that is painful, and does not offer any relief, only adding to the pain. 

Onset:
CPS  can begin from day one of the stroke/injury or can take months, even years to make it’s appearance.  Central Pain Syndrome can be a life threatening condition:

***NOTE****It can often cause depression, anxiety, anger, frustration and hopelessness. When a person rates the pain as a 9 or 10 on a pain scale, and there seems to be no relief in sight, with no hope or understanding or support from family and professionals, they may even come to feel that suicide is the only way out. 


Triggers and Sensitivity reactions:
*Stress, anger, depression.
*Movement, daily activity, ROM exercising, tiredness.
*Exposure to sun, rain, cold, snow, breezes, AC, drafts, unseen sun flare activity, barometer
changes. 
*Environments of warmer and cooler from the particular person’s comfort zone.
*Added pain or swelling. 
*Light touches of another person, blanket, clothes, splints.
*Sudden movements: 
*Yawning and other reflexive involuntary movements such as sneezing, being
startled, loud noises, bright lights and even vibrations as from riding in a car.
*Light sensitivity for the eyes,
*Noise sensitivity for the ears can be  triggers for higher pain levels.
********************************

7 Types of pain sensations

Any or all of these pain types can overlap. A person could have one or all of these that can come and go as time passes.

1. Burning dysesthesia:
A mixture of pain sensations in which persistent light 
touch is perceived as a thermal sensation. There are four overlapping subtypes.

Burning:
”A chemical, not a purely physical burn”; “A mentholated burning”; burning it up with fire and acid”.

Cold:
”Like touching dry ice”; bone cold.

Wet:
  Wet and uncomfortable underneath the burning.”

Motor or Kinesthetic Dysesthesia: 
A feeling of cramping and contraction 
associated with burning. “A terrible fatigue in my muscles, “A feeling of drawing, pulling, crushing.”

2. Hyperpathia: 
Heightened response to a noxious stimulus. 

3. Allodynia: 
Pain from a very mild stimulus. Can also describe referred pain. 
Can relate to touch, location, temperature or muscle loading.

Touch: 
”Light touch from clothing becomes unbearable after a few minutes, 
like an awful sunburn”; “Paper laid on the legs begins to burn unbearably after a minute or so.”

Location:
Touching the face might show up as burning on the outside of the forearm. Sitting long enough for the skin to burn can become  burning out to the side on the legs 
and behind.”

Thermal: 
Picking up a warm drink, it feels hot in the hand. Warm ambient 
temperature sensitizes the skin so that all the other pain features appear more 
easily.”

Muscle loading: 
Movement makes the body unbearably sore. The day after exercise, the body might have  awful feelings of lactic acid buildup. Lying in bed can feel like sleeping on rocks.

4. Shooting or 5. Lacerating:
Sharp stabbing pains with an electrical quality. 

6. Circulatory: 
A very common type in which circulation feels compromised.  The feeling of pins and needles in parts of the body.

7. Peristaltic: 
Feeling of fullness,  burning, cramping, nausea or distention.

===========================================

Central Pain Syndrome 
can require a multidisciplinary team of pain specialists.


Anesthesiologists, neurologists and neurosurgeons, rheumatologists, psychiatrists, physiatrists, family doctors, nurses, physical therapists, acupuncturists, massage therapists, and chiropractors all have different methods of treating chronic pain.

I got some help for the pain in the beginning from antidepressants. However, the meds stopped working, and I have CPS ALL OVER MY BODY (i.e. EVERYWHERE!). I’ve tried Cymbalta, Lyrica, etc. with no help.

But Chris, if you don’t mind me asking, did it take a while being on the Cymbalta for it to work on the pain? And did it take a rather large dose?

I’ve tried just about everything, and pain meds help at least some times so I can function some. But the way pain clinics are set up, it’s like they’re drug dealers! I’m not even allowed to see or talk to the actual pain physician; I have to see a Physician’s Assistant every month. And he’s in such a rush and not focusing clearly, and messes up my prescription almost every time. Plus, they’ve made me take the patch (fentanyl), which causes horrible, life-threatening side effects, including atopic seizures – where I suddenly lose consciousness and fall, stiff as a board, until my body hits the closest object or hard floor. I’ve been to the ER 5 times for different, rather serious injuries themselves, due to these falls. And my HEAD has hit first (and very hard and loudly!) at least 30 times!!! It’s a wonder I’m alive, as my head has been hit all over by sharp objects (corners of dressers, metal cabinet handles, bathtub, hardwood floor, etc.) I can’t even do yoga now. I was trying to calm down my stress and did a bending over pose, only to lose consciousness and hit my head flat on the top of it onto the hard floor, crushing in my neck!…And with all this, plus numerous other serious neurological symptoms, the doctor….oh wait, he’s NOT a doctor; he’s a “physician’s assistant” who is NOT supervised…..anyway, he will not let me try anything else. I am stuck taking this medicine that has proved to be fatal in several cases. To those who are truly helped by the patch, that’s truly wonderful; it just is dangerous for me; and I need to have it changed. And last time, the physician’s assistant made a huge error on my prescription, leaving me without ANY meds for 4 days, suddenly after having been on this stuff for years! But the doctor who’s supposed to be there to supervise him wasn’t even there, and wasn’t within contact (supposedly). And still they wouldn’t even let my mother talk to the doctor! So, I’m stuck with this stupid PA “drug dealer”, who’s forcing me to take a dangerous drug, without monitoring the drug. So basically, I have no actual doctor.

And this is the 3rd pain clinic I’ve been in. The 1st doctor stopped treating pain with meds and just focused on back pain physical rehab and non-narcotic meds (as the OTHER side of drug dealing – the ACTUAL “addicts”, abuse the system and make it difficult, if not impossible for people with REAL and even PROVEN, DOCUMENTED CNS pain issues to get just a little meds so they can somehow survive through the relentless, excruciating, torturous pain.) Then the 2nd pain clinic was actually worse than the one I’m at now. Patients had to sit in the waiting room for 5-8 hours just to be seen. Then a nurse saw you and messed everything up. And that doctor ended up losing his license.

But please don’t think I have anything against nurses, or even physician’s assistants. I think it’s asinine for them to be given autonomy in place of not only an actual Doctor, but a Doctor who is an actual SPECIALIST. In which case, the Doctor would have a pretty good deal of schooling plus experience plus specialization schooling and training. While the PA or CNS has a 2-year degree (which is actual 1 year of schooling and 1 of clinical rotation) and sometimes they have only experience. Yet they are given quotas to reach of more than 20 patients per day (all without the doctor being there!). And most of these patients have complex, serious issues, which can stump to best specialists. I am just flabbergasted that this treatment….or mis-treatment is permitted.

I am so sorry for going on, and on. But I’m SO exhausted! I have like no immune system now, and my adrenals have crashed after years of cortisol being 4 times higher than normal. I even tried to get into Cleveland Clinic’s Chronic Pain Rehab Program, and the CPS specialist recommended me for it, and for me to be inpatient, due to the seizures and difficulties with meds, so they could work that out and get me stabilized. I was and AM willing to put myself through more torture through the physical therapy. [side note: I used to LOVE to exercise, and played all kinds of sports, did aerobics, yoga, pilates, etc. But with the CPS when I try to exercise, even just walking briskly, I'm so flared up in the sharp, burning, and outright indescribable pain, and swollen and throbbing all over in muscle spasm pain, on top of it, and I can't sleep for days! I HATE THIS!!!]. Anyway, when I went for the chronic pain rehab/CPRP, they had me fill out 2 hours worth of questionnaires, then said that I was a good candidate for the program, and then when time to schedule my treatment came, she informed me that they no longer had inpatient for that program (despite the website and doctors there saying otherwise). In fact, she (a nurse, herself) said the CPS specialist/neurologist who referred me (and was located on the same floor, not far down from her CPRP office) was “stupid for telling me that; he had no right to do so; and someone needs to educate him”. She said they were changing it to outpatient only, and patients had to stay in a hotel on the campus. But I couldn’t do the program because of the seizures. AND I WAS STILL JUST TRYING TO GET OFF THE STUPID MEDICATION THAT CAUSED ALL THOSE DANGEROUS, LIFE-THREATENING SYMPTOMS. I wanted so badly to attend the program too, as it had stress reduction methods, biofeedback (with which I totally believed I could reprogram my CNS). But after having to make a 3rd appointment there to see the CPS specialist again, he just said there was no treatment for CPS, although he would recommend opioid-rotation. But HE wouldn’t treat me; he said I had to find someone closer to me. And as I’d already struck out on 3 pain doctors/clinics around here, I asked him if he knew anyone he could refer me to, and he didn’t. He said he THOUGHT there was a CPRP with inpatient in Boston, but not for sure. So, I was left with NOTHING. (Except more BILLS! That nurse had my time of only filling out questionnairs billed as “EMERGENCY” and charged $600!).

OK, I will HAVE to shut up now as my body can’t stand sitting at the PC. But in closing, I do need to stay that the only thing that has kept me hanging on through all of this is my family and faith that I was somehow meant to overcome this and then possibly be able to help someone somehow someday. But I do not have a family of my own; in fact I’ve lost everything I worked so hard for and was so successful at and loved so much. I’ve been here for my family (parents, sisters, nieces, nephews, aunts, etc.) when they needed anything, until recently when I haven’t even been able to take care of myself at times. Yet they don’t even want to drive me to a doctor’s appointment or the store when I have Meniere’s so bad that I can’t drive and can hardly stand for days. My mom saw how 2 of the doctors were and just said it’s too frustrating for her; she can’t deal with it. Unfortunately I do not have that option. And it’s actually turned out that I’m nothing but a burden to my family; they don’t even want to deal with me……..even though I’ve been practically killing myself just to stay alive and make it through the torture, yet still be there for them. It doensn’t matter though; they’d clearly be better off with me dead and gone.

So, now I’m left with the faith I HAD. With the increasing difficulties with doctors and just EXISTING, and with all the unanswered prayers, and the disappointing “positive thinking” gone down the toilet, I’m not left with any other options now but to end it, I DON’T WANT TO GIVE UP, of course. I’ve tried everything I can think of….and it hurts just to think now. I’ve prayed and prayed and begged and pleaded with God or whatever positive spiritual being or entity might be out there……seemingly to no avail. And I’ve swallowed any ounce of pride I ever was able to obtain, and have even BEGGED my family to try to help me find help. But they’re too busy planning gambling trips and giving $1000′s to my alcoholic sister who does not even try to get help. They just keep enabling her, and then telling me they don’t have anything to give…not even help searching I guess. So, unfortunately, it seems that they really do want me out of sight and out of mind.

And I am so sorry to have vented this, ending up purging out way more than I meant to or wanted to. But I really am at a dead end…no pun intended. If anyone has any ideas how to best disappear I would greatly appreciate it. If I do end up actually dead somehow, I certainly don’t want them to have to deal with my dead body and disposal costs. There’s no need for a funeral, because all my friends are gone (I actually made the mistake of coming back here from CA -where I actually had the best, real friends and felt like family- to be here to take care of my nieces and nephews while their parents were too busy being alcoholics to take care of them. But now they’re in their teens and have lives of their own and don’t need me. But hopefully they’ve learned not to ever sacrifice their own happiness trying to please anyone; I have a good feeling they are going to do really well…..AWAY from here!). : )

Again, I really am sorry for my mind dump. I’m not giving up yet…I’m still holding out for a miracle…until I just can’t possibly hold on anymore.

I wish everyone the best, and I pray none of you have to live through the nightmares I’ve unfortunately stumbled upon (or deserved, or whatever the theory is!) : )