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Post stroke syndrome and fibromyalgia

I m dignosed with post stroke syndrome/central pain syndrome recently. Suffering both post stroke pain and chronic fibromyalgia at the same time that has made my life miserable. I get daily migraine tension type headaches, burning pricking numbness pain, stiffness and bad muscle spasms. Amitriptyline,  cymbalta, baclofen gave me bad side effects. I m hoping someone can share their success with other drugs. I m willing to give it a try.

Thks in advance!
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Avatar universal
See a doctor ASAP or go to the ER.
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I am having sudden pain in left arm. Sudden headache.  Blood pressure been high few days.   Heart rate 125. A little high for me.   Have had 2 past strokes but didn't know.  Now pain yet numb left arm and my head.  Neaus r a, eyes hurt.  ?
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So sorry to hear about your new pain.  I have continued to get new pain syndromes since my stroke more than 5 years ago.  But fortunately with all of my doctors at an excellent university medical system, I have gotten okay relief.  But there is a long list of medications that I have had bad reactions to.  Still have been able to find others that did work.  Really sorry to hear that you still having so much trouble.  
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Avatar universal
Hi sara,

Hope you are better. My condition has been worsened lately with bad swelling from lower back to toe together with super awful pain. I have tried furosemide that gave me bad buzzing echo sound in the ears and elevation of legs gave me worsen muscles cramp thinking that it was fluids retention but still fail to reduce the bad swelling and pain. I will be giving chinese herbs and supplements a chance since I have lost hope in sourcing for a medication that can improve my condition. Will keep you posted if either of these two can help.
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You need to find another doctor--one in pain management.  Your doctor is not doing nearly as much.  Why aren't you taking pain medications if you are in screaming pain as you described above? If you in fact do have chronic headaches, why aren't you trying daily preventative migraine meds.  If you have tried several which did not help you, then you would definitely qualify for and most likely would be helped by Botox.  Botox is for people who have headaches at least 15 days a month.  I can't believe that your doctor is just trying to get you off all your other medications, except for Zoloft.  What are your other medications besides the benzo one?  I am so truly sorry for all your pain.  You can get better.  Keep faith that it will come.
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Avatar universal
Hi sara,

I have managed to get trigger point injections but with only little relief. So, my doc stop there hesitating to give me more taking convulsions risk into consideration and decided to put me on fentanyl patch but I have got very bad nausea plus pain being magnified. So, still working on other pain management.
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Avatar universal
I meant to say above, "There are many other pain medications that you COULD take."
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You should tell your doctor about your symptoms, so that they can determine what the cause is.  I never did understand why the doctor is having you withdraw from all your medications when you obviously need medication for your pain.  If you don't know why, you should see another doctor.  There are many other pain medications that you take.  Try to see a pain management doctor if possible.  Wish you better days.
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Hi sara,

I was told by my neurologist that my condition is not that serious yet to receive botox injections. So, I was given zoloft to help me in withdrawing from all my current medications. I m still in very bad pins and needles numbness pain spreading to my entire body causing me to feel cold all the time and weak. I m very lost now of whether the pins and needles numbness pain is coming from my stroke or from all these medications as they somehow got to do with the brain. So, I m looking forward for the 2nd time to withdraw from my medicatoons and hope I will have an answer by then but meanwhile I m still sourcing for help to reduce my pain. Take care.
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Avatar universal
The neck weakness should only last for a few days according to my Botox doctor. I have never had that problem over 3 years getting them every 9 to 10 weeks.  But I think that most people only need them every 3 months. The Botox has given me so much relief.  Mine are just very difficult to treat having been caused by my stroke.

You mentioned a while back that your headaches had gotten chronic.  I hope that you know if you take any pain reliever more than two or three times a week, you risk getting rebound migraines, which are a vicious cycle.  

I myself can't believe that any therapy can help severe pain, but you correct me if I'm wrong.  You said that you were trying CBT.

I really hope that your pain will get better. I know how terrible severe pain can be.  I've had a lot of it in my life.  Many ER trips.  You definitely need more help with your pain.  Wish you the very best.
Sara
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Avatar universal
Hi sara,

Yes it helps a bit when I m back to my med but the pain is still unbearable at times. I have been loosing weight lately. I m still considering having botox injections offered on just my head and neck with a risk of neck muscle weakness. U take care too !
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Avatar universal
So sorry to hear that the withdrawal didn't work.  Could you try to withdraw much more slowly?  To get off a benzodiazepine which is what Lorazepam is, can be a brutal med to withdraw from.  Won't your muscle spasms and nerve pain get better after you go back on the medication?  Why don't you ask about the Botox injections which I know can at least help with your leg pain and maybe elsewhere as well.  Botox has greatly helped my severe migraines which were caused by my stroke.  I still have leg pain and can barely use my hand, plus my arm doesn't work that well.  But nothing like the pain that you are suffering from.  And what about the Butrans patches?  Can you try the Botox or Butrans patches?  You take care.
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Avatar universal
Hi sara,

I have failed withdrawing from my medication as the withdrawal side effects are too much to bear. My post sensory stroke pain on one side of my body worsen till I m unable to make a single move.  I suspected the muscle spams and nerves inflammation are overwhelmed. I m basically screaming in pain daily.  My stress level has reached the max causing me to cry most of the time. I m thinking of adding nortriptyline (pamelor) to my medication but still waiting for my neurologist to prescribe on my next appointment. Crossing my fingers it may give some relief.
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I'll look forward to hearing how going off of your medications goes for you.  I hope that you can go off the benzos very gradually to avoid the withdrawals. Really hope that your pain gets better.
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Hi sara,

Fyi, my headache and numbness pain (cps) on my body has turned super chronic for the past one week. My neurologist decided to wean me off  tegretol and lorazepam. I will also be cutting off my lyrica soon after my tegretol and lorazepam. I m now preparing to go through withdrawal days while not intending to try anymore new anti depressants as most of them made my condition worst base on my experience and after a some thoughts. I hope I will be able to lead a new painless life without medications. Will keep you posted. Take care.
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Avatar universal
Not sure what you mean by pressure from your partner.  If you feel like going into it, I may be able to help.  I'm glad that you are continuing to try to get better medical help. Let me know.  You take care.
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Avatar universal
Thanks sara. I will not give up on trying other medical treatment as well as continuing my benzo.  I believed my pain is partly contributed by my stress, anxiety and depression as I have been getting pressure from my partner indirectly but I m staying strong and positive to overcome all my problems and hopefully with less stress and new medication, my pain will be better controlled. Will keep you posted.
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Avatar universal
I find it a bit strange that the doctors don't want to prescribe you anything else because you are only taking Tegretol and Lyrica.  Have those 2 meds helped you at all?  You only mentioned about 4 medications that you couldn't tolerate.  I don't see what the big deal is with you being on benzos if you're hurting so much.  What about Butrans patches which give a low level of opiates which have kept me out of the ER with my migraines?  The Botox injections may not help your post stroke syndrome/central pain syndrome, but the injections could help your migraines.  There is absolutely no medication that goes into your system at all.  It is all local. You can certainly try the CBT and hypnotherapy, but don't give up trying with other medical treatments.  Keep trying to find better doctors.
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Avatar universal
Hi sara,

Yes. CBT is cognitive behavioural therapy. I have tried pristiq long ago and I remember my first dose gave me very bad nausea, gas, no appetite and made me a zombie that worsen my anxiety . I gave up immediately. I was asking myself whether my perseverance is lousy on trying new drugs or am I making the right decision to give up immediately so that they will never worsen my condition. I really wish I can  find a drug that is able to help my pain and anxiety while having only little side effects. My neurologist and pain specialist have decided to stop prescribing me drugs as they believed adding more drugs to my condition are just giving me more side effects and worries (anxiety). So, I just have to continue with  tegretol and lyrica while my psychiatric still trying his best to offer CBT and hypnotherapy.
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Yes, you need a different anti-depressant.  Looking up Lexapro it shows that side effects can include suicidal thoughts and "Musculoskeletal side effects including arthralgia, neck/shoulder pain, muscle cramp, and myalgia have been reported frequently."  The last according to drugs *******.

Is CBT cognitive behavioral therapy?  I wouldn't think that would help you that much, but you could certainly try it.  Your physiotherapy was not right if it made your pain worse.  When I went through months and months of physical therapy after my stroke, when the exercises made me hurt, the therapist would always adjust the exercise down so that it didn't hurt.  You needed a better therapist with the physiotherapy.    
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Hi sara,

Thank you very much for your reply and advices. I m currently on 1.5mg of lorazepam daily and missing a dose will basically throw me out from a seat and depression started to attack me. My neurologist and psychiatric believed that I m addicted and wanted to wean me off from benzo by prescribing me ssri (lexapro ) 0.5mg daily as a replacement but it seems to worsen my paresthesia pain and depression till having thought of ending my life. So, I m hoping they will continue to give me lorazepam while deciding to change my anti depressant or giving me a course of CBT.

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Avatar universal
Sorry I didn't see your response on March 31 until just now when I was cruising the site in general.  If your dose of the benzo is not too high, I wouldn't worry about taking it. I've been on a benzo, Klonopin, for the past 5 years to treat myoclonus caused by my stroke and haven't had to increase it at all.  On another blog, a women wrote that she had been on the same 0.5 mg dose for the past 22 years and never had a need to increase it. If it helps that much, I would take it.

As far as my anti-depressant, everyone is different.  Certain anti-depressants are known to be better at treating pain than others. I would ask your doctor for one.  All of them are natural pain killers.  My anti-depressant is Effexor, and now the upgraded Pristiq which doesn't interfere with my sex drive. It has been the most effective for treating my depression, but when I increased it, I noticed that it helped the pain.

Don't give up with trying new things.  
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Hi sara,

Just remember that you have mentioned in your previous reply to me that your anti depressant did give you some relief. May I know which anti depressant you are on ? I may give anti depressant another try while waiting for my botox injection.
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Hi sara,

Fyi, I have tried increasing my day benzo (lorazepam) dose supposedly for occasional calming effect when pain is too unbearable and it seems to help better than all other drugs nowadays. I know benzo is super addictive and withdrawal can be worse. So, I m really in a dilemma now whether to continue or to discontinue slowly and live with the terrible pain again. All doctors told me to stop it but they are unable to replace something for my pain sadly and advised me to live and cope with it. I m basically a zombie now that can't properly sit, stand, bend,walk or lying down and If I do so, my flesh is like going to tear apart feeling. Angony.
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