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Post stroke syndrome and fibromyalgia
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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!
38 Comments Post a Comment
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Avatar_f_tn
You didn't give enough detail about where your pain is to further help you, but as far as the migraines I can give you some advice.  Were your migraines caused by your stroke?  Did they start about the same time?  I got distinctlvely terrible different migraines a month before my major stroke.  There are nerve block and trigger point injections which help muscle spasms and have helped me greatly.  Also if you're not able to be helped by the daily preventative migraine pills which ou don't mention any of the common ones, then you are eligible for Botox injections which have also helped my migraines.  

I also suffer from fibromyalgia as well as the migraines caused by my stroke.   Trazodone has helped my fibromyalgia greatly.  

With your other pain, you could try to get some pain killers, except that any pain killer taken more than 2 times a week promote rebound migraines which are even worse.  None of my pain killers have ever helped my fibromyalgia at all.

Let me know more about you so that I might be able to help you more.  I wish you the best.
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Avatar_m_tn
Hi sara,

Thks for your reply and advice. I suffered one sided neck pain before my stroke and had no more neck pain after stroke but begining to have daily one sided migraine tension type headache, burning neck pain all the way to my lower back a year after my stroke and a seizure. I m recently struggling with stiffness and numbness on my whole body too. I m only on 75mg of lyrica once daily as I m unable to tolerate higher dose due to it side effects. Fyi, all pain killers (NSAID) don't help at all. I will try trazodone as recommended. I will request nerve block and trigger points injection from my neurologist on my next appointment. Thank you very much sara. Appreciate if you have more to share with me.
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Avatar_f_tn
no the friend just collasped and rushed to a+e in which a burst clot was found......operation went well... transferes to the stroke unit.. but 4 days later started to not be so alert... in which they sent him for a further scan which showed a clot near the brain stem... this discussin wot to do now....mon its now wednesday and no agreement yet.... wen spoken too he do wake as he is awear of his surroundings,,, can u give a little help in his recovery?? if operatated??xxx
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Avatar_f_tn
Is your neurologist aware of your whole body stiffness and numbness?  Make sure your doctor knows about this in case the doctor decides to do further testing on you.  

The Lyrica is not working well. You deserve much better relief.  Can you be tried on another daily preventative migraine medication?  The most common one is Topomax (topamax).   But if your neurologist thinks that there are no more daily migraine meds to be tried, then you should ask for Botox injections.  They usually give tremendous relief to those who are NOT helped by the daily meds.  Most people are helped for at least 3 months with the injections.  I have an especially difficult migraine situation and need them every 10 weeks.  Make sure you let me know if you are going to get the botox and I will give you more advice.

So, decide whether the fibromyalgia or the migraines are bothering you the most for whether you want to try the Trazodone first or another daily migraine medication.  It's best to only try one new medication at a time so that you can figure out which one may be giving you intolerable side effects.

And definitely ask for the nerve block and trigger point injections.  Not all neurologists know how to give them.  And some of them only know how to do a couple to the back of the head. If you can only get the couple to the back of your head at the time of your appointment, get them.  I get the full set of about 15 injections which are given to the forehead, sides and back of the head, the neck, shoulders and your back.  Then ask for another doctor who can give you the full set if they don't work.

If your neurologist is not offering you much more, then find another one.  There are varying qualities with these doctors.  Migraines and pain are very difficult to live with. I know.  Hope this additional info may help you.
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Avatar_m_tn
Hi sara,

Unfortunately my neurologist still wants me to increase my lyrica dose and doesn't believes I m not getting any relief. Besides, I was advised to learn to cope with the pain and that's it. So, I m planning to see another neurologist and see I have any luck with the new one to treat me.
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Avatar_m_tn
Hi teensy,

Hope your friend is doing well. Recovery needs lot of rest and support from family members or friends. He has to stay calm and keep stress level at minimum to none. All the best to him.
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Avatar_f_tn
Get rid of that neurologist!  That's outrageous and yes you do hear about doctors like your neurologist.  Definitely get an appointment with another neurologist ASAP.  In the meantime, perhaps you can get some relief from a regular doctor.  If the next neurologist is also a jerk, get another one.  Just be very clear about how bad your pain is.  Don't mince your words in describing it.  Let me know if you get more help.
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Avatar_m_tn
Sure Sara. I will keep you posted if I manage to get help or treatment for the pain from new neurologist.
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Avatar_m_tn
Hi Sara,

Have you ever experienced swelling in feet and abdomen with pain? I just found my foot and abdomen are swelling today. I m wondering if  lyrica is the culprit or it's either a new fibromyalgia symptom.
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Avatar_f_tn
Fibromyalgia does not cause swelling.  I would call your doctor's office about the problem.  A nurse can take your call and check with the doctor.  Also you could look up the side effects of Lyrica.

I don't think that my experience will have anything to do with your side effect since you have swelling in both your feet and your abdomen.  Last year, I had swelling and pain in my abdomen which I saw a pancreatic specialist about possible surgery needed from that symptom plus some other symptoms.  He said, no, and told me to take my Miralax and Benefiber with a LOT of water.  Then I never had the problem again.

Make sure you call your doctor's office about it or if you have a regular doctor, you could try their office since your current neurologist is such a do-nothing.    
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Avatar_m_tn
Hi sara,

Fyi, I was told by another new pain specialist recently that my pain is a complex regional pain and injection is not recommended. The only option for pain management is physiotherapy and visit to a psychologist which I totally disagree with.
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Avatar_f_tn
Danly, How terrible that you got another bad doctor.  Physical therapy should  help you quite a bit with your body pain.  That did help my body pain a lot.  

Sorry my postings have mostly been about your migraines which the physical therapy only helps some.  I do it almost daily on my neck and shoulder areas, but I also need all of those injections and now 4 different meds.   If your migraine pain is more excessive, the PT may not be enough.  If you've tried a number of daily meds for your migraines, which it sounds like you may have, and if you have at least 15 migraines a month, you would qualify for Botox injections to help your migraines.  It usually does give relief when the meds have not been helpful. And I still question that the nerve block and trigger point injections wouldn't help you.  Also there are other medications that could help your pain.  I now wear Butrans patches which give a very low level of opiates which have kept me out of the ER.  Also I recently was prescribed an off-label medication called Namenda (usually given to Alzheimers patients which I DON'T have), that has given me significant relief.  Plus my anti-depressant does give me a little relief.  Plus I take an herbal medication called Petadolex which the studies have shown cause a 72% decrease in migraines, but it costs about $55.00 a month.  None of the daily migraine meds worked for me at all, or gave me bad side effects (except for my anti-depressant).

So in essence, your doctors are not truly competent with any answers for your headache pain compared with my 3 neurologists and a headache specialist all at the same university.  Can you find a university medical system which may have better informed doctors?  I hate to say it, but you need to try still another doctor.  And be sure you emphasize the amount of pain that you are suffering from.  

But in the meantime, try the physical therapy which should give you some significant relief from your body pain.  But it takes a lot of work and the progress is slow, at least it was with me.  When I questioned the physical therapist about my slow progress, in spite of doing the exercises every day at home, she said, that's the way it is after a stroke.  If the exercises give you more pain, then it's the wrong exercise. My physical therapist could always find a more simple exercise that would not hurt me, but give me some progress.   So find a different physical therapist if they are not giving you exercises that don't make the pain worse.  

So sorry about your inept doctors when you are in pain.  Wish you the best with finding more relief which you certainly deserve.  It's a matter of having more of a life.  Sara
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Avatar_m_tn
Hi sara,

Fyi, I have yet to find a neurologist that is able to treat my daily chronic pain. Physiotherapy has increased my pain and made my swellings worse.
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Avatar_f_tn
So very sorry that you are still having so much pain.  What is Physiotherapy?  I've only heard of physical therapy.  If the physiotherapy is making it worse, you should stop it.  And seeing a psychologist is just nuts.  Hope you can find another pain management doctor or neurologist to treat you.  A lot of these doctors are getting spooked by the Federal government coming after them for giving strong pain medication.  Don't know if that's your real problem.  Keep trying and good luck.
Sara
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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_f_tn
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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Avatar_m_tn
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_f_tn
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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Avatar_m_tn
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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Avatar_f_tn
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_m_tn
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_f_tn
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_m_tn
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_f_tn
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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Avatar_m_tn
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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Avatar_f_tn
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_m_tn
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_f_tn
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_m_tn
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_f_tn
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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Avatar_f_tn
I meant to say above, "There are many other pain medications that you COULD take."
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Avatar_m_tn
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_f_tn
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_m_tn
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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Avatar_f_tn
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_f_tn
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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Avatar_f_tn
See a doctor ASAP or go to the ER.
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