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!

[sara12345]

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.

[Danly]

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.

[teensy36]

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

[sara12345]

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.

[Danly]

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.

[Danly]

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.

[sara12345]

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.

[Danly]

Sure Sara. I will keep you posted if I manage to get help or treatment for the pain from new neurologist.

[Danly]

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.

[sara12345]

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.    

[Danly]

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.

[sara12345]

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

[Danly]

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.

[sara12345]

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

[Danly]

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.