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I suffered strokes, at age 41, in November 2011. My doctors informed me of many things I would have to overcome such as mood swings, extreme weakness, sleeping problems etc. No one single health care provider or piece of literature I read mentioned anything about pain. In March of 2012 I ended up in the ER twice due to severe pain. The ER Dr did a CT and couldn't find anything but mild constipation. She prescribed stool softeners and sent me home. When I went back a few days later still in severe pain but having cleared up the constipation issue, she told me that it was basically all in my head. I realize now that she was right in that diagnosis. My brain is trying to reform connections and is just mixing up the signals. I have moderate to often severe pain in my right shoulder, arm and ribcage. I take nuerotin (300 mg) three times per day and Naproxin every 12 hours. This combination barely helps. Anyone else had this type of pain and if so, what is working for you.I have taken different antidepressants with little relief. I am going nuts!! This pain is limiting me much more than the original strokes. I recovered fairly quickly and was back at work full time within 3 months.

 

 

 

Thanks in advance to anyone who may have good advice.

Leigh Anne

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Hi LeighAnne,

I have constent pain in my left hand, left side of face, and left ankle foot. Was told this was good at first because this ment my feelings where coming back. Went to see my neuro and was put on Gabapentin, it takes time to adjust and get the right dossege.Today the pain is not gone but better. Nerve pain is tuff and eveyone is different, you have to find the correct meds and dossage.

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Hi Leigh Anne. I had a left hemisphere stroke 18 months ago, so am left-side affected. Since that time, I have experienced a variety of pains up and down my left side that I attribute to brain re-wiring. Those haven't been too severe or long-lasting, though, and are beginning to fade away. By far my worst stroke-related pain has been the result of muscle spasticity, which began at about nine months. The contracted muscles on my left side pull on my joints and bones and cause pain, partcularly in my shoulder joint, shoulder blade, ribcage, and ankle. Cold and rainy weather makes it worse. No one warned me about the spasticity, which I've read affects 25% of survivors, so I made the mistake of giving in to it and avoided moving my shoulder last winter. I ended up with "frozen shoulder" and had to go to an orthopedist for steroid injections so I could exercise it and loosen it up. It's much better now.

 

I don't know if you have this problem or not, but just in case, here's what I do. I make it a point to stretch and exercise everyday, even on bad weather days when the muscles are particularly stiff. I can loosen them a bit by taking a hot shower or using a device called a Bed Buddy, which you warm up in the microwave. I then go through a series of stretching and low-impact exercises like crunches and toe-touches. I also swim at our local Y. This has helped, and while I still have the spasticity, the pain is much less. Good luck to you.

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Hello Leigh Anne, Welcome to stroke board! I just went over 9 years recovering the 15th of January. I was 5 months in the hospital and had therapy daily and still came home unable to walk. I had pain every where and I still have pain. I take pain meds and have been on many where some work good, others just for a while and others needed adjustments on the dosages. You will have pains for a long time, you will have soreness, you will have headaches, loss of appetite, but the main thing to keep in mind is that you survived the stroke and are still here with your family and loved ones.

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I have read your post I do not experience constant pain that my stroke, but I know that many people suffer. I know that we have a few people on the website that suffer from central pain. I just get sharp lightning bolt teens down my affected leg every once in a while, mainly at night. Going to attach a link on this post sends you to the national stroke work website that has some information about essential pain management. I wish you the best of luck.

http://www.stroke.org/site/DocServer/NSAFactSheet_Pain.pdf?docID=995

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Thank you all for the information and encouragement. What is so odd about all of this, having had strokes, dealing with pain, high blood pressure and diabetes, is that I manage an organic grocery store. I teach people everyday about food is "health care" and medicine is "sick care" and I find myself swallowing pharmaceuticals every morning and taking an injection every night. I eat a very healthy diet and exercise often. I rarely sit still at work or at home. Gardening has become my new favorite hobby. Heredity is what the doctors tell me is the cause of my troubles. I try my best to overcome the obstacals by leading a healthy life. This pain is trying to defeat me. Last night my son and I were mixing garden soil in a large wagon and that almost had me on my knees in tears. Lucking my son took me inside and ran me a hot bath. I'm lucky to have wonderful sons (19 & 22) to help me thru this. I will not be defeated! I will overcome!!!!

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OK and their are people way better versed than me -- around this joint... dan just came through a bout ( hope he is through) of severe pain... but during a acute stage we wre thinking it was phantom pain... the brain... and in the many conversations with the docs.. the drug elavil -- or amitriptyline ( same stuff) was brought up .. apparently it can alleviate phantom pain- to an extent... it has a lot of side affects though - so it becomes a horse apiece... but it is a thought .. in the end dan didnt have "phantom pain " his pain was real - he had a hernia that was about to incarcerate his colon/intestines... but since the stroke 2 yrs ago he has had chronic pain, constipation issues with his stomach... those organs can become paralyzed -- just like your limbs can, maybe not totally, but it certainly S L O W S down the system... dan has been extensively checked over ( his aphasia does not help this process) and nothing, nothing, nothing... but hopefully this was a root of some his issues, doubtful -- since we havent been to lucky in many areas of our life... good luck..

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I have what we believe to be Central Pain Syndrome and it is yucky. Made my OTs rather helpless because the pain was primarily upper body at first. I was on nuerotin in the hospital, but since I am quite allergic to every possible narcotic and many other pain medications as well, tylenol (or tylenol PM at bedtime) is about my only recourse, though I still keep nuerotin on hand for times I simply cannot cope, and take only if I absolutely must, knowing I will hive, and keeping an epi pen handy in case I have any worse of a reaction. Fortunately, as drugs go, nuerotin is one I can tolerate faily well and has yet to ever give me a life-threatening reaction as any standard norcotic likely would. The pain is mostly my left side (more severly stroke injured side) that gives me great pain but occassionally the right wants to join the party too. I don't know if this is because there was also some much milder stroke impact there as well, or if it is just the left side trying to be generous and share the wealth? As for shoulder pain, that is getting better over time because the shoulder subluxation and tendinitis seem to both be slowly improving with time and (so painful to do, but eventually really worth the pain reduction results) strength training. The face/jaw pain on my left seems to be tied to fairly severe TMJ and atypical trigeminal nerve involvement, though it is also, overall, improving (and I can open my mouth much wider) with both speech and physical therapies.

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I sure know what you are going through i could not raise my left arm without having severe pain I thought somehow that I had a torn muscle in the shoulder I had a good O.T who was able to get me through it she put a muscle cream called Biofreeze on the shoulder along with a warm towel before every therapy session with a lot of stretching exercises I was finally able to get through it for pain I used tylenol with codeine since you use tylenol you might also see if you could use Norco it is a little stronger just know that the pain wiill go away it does take some endurance to get through it i wish you all the best on your recovery we all know that the journey of Rehab takes a lot of patience and hard work

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Hi LeighAnne,

I have CPS too, affecting the LT side of my neck, shoulder, and on the outside of my LT arm. and the back of my LT hand; It's an achy-burning that doesn't respond well to anything. Humidity along with it being in the 60's I've found pretty much guarantees pain.

You are definitely not alone, in fact there are even websites dedicated to it.

Hoping you find relief,

Susan :Typing:

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I don't have the pain you're speaking of, and I am so glad I don't, because every pain med I've ever taken has put me to sleep-soundly- for at least 4 hrs. So, knowing me, I just wouldn't take them. But, with chronic pain, you have to, unless you wanna have pain, which has its own issues with which to contend. Maybe your doc can refer you to a pain med doc. They seem to have a better handle on managing pain. Good luck. BECKY

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