I had a bad reaction to Tramadol. Maybe I could try a different manufacturer. Sometimes it is the fillers I react to. Also reacted to gabapentin. I can take Baclofen but start reacting if I take too much too often (I tried that for the neuralgias). Klonopin helps with muscle spasms. I can't take a lot of meds or have to lower dose due to kidney disease. Flurbiprofen helps but is bad for kidneys. Tizanidine isn't great for kidneys. The other meds that I do take (Baclofen, Klonopin) can back up with kidney disease so I take 1/4 dose. Topicals like Ben Gay and BioFreeze help with some things.
It sounds like Tizanidine and Tramadol help you- and I hope they help you enough! Have you ever tried a tricyclic antidepressant? It is on a lot of pain mgmt. charts.
I truly feel for you. To date, my kidneys and liver have been great. I did have some GI bleeding two years ago, but that has been controlled with yet, another pill. I could write a book on how deeply I despise pills. I have not tried the antidepressant route because of the real side affects. Ever other drug has been tried and failed. Nerve pain is REAL, and any doctor that says pain is not a disease is an idiot. Here is where my world opened up. This is a Ted Talk that makes sense in simple terms. This allowed me to have a clear and honest conversation with my pain management team. Knowing is powerful. To learn that this pain is being triggered by a faulty brain switch, is maddening. https://www.npr.org/2017/02/10/514142569/is-pain-a-symptom-or-a-disease
Yes, it is with one exception I have been told. Every pain management doctor including the head of Emory University PM department all stated that spine stimulators have worked wonders for amputees. The difference I believe is that the brain has been mapped so well, identifying the right place to attach the electrodes is simple. With Allodynia, not one of the top surgeons in my area could even confirm which nerve or group of nerves are causing all of this misery. I begged them all to just cut the entire section out, but they refused. Where are the crazy doctors that will do anything for cash. Sorry, I forgot, they all do plastic surgery in strip malls now. LOL! Seriously, even Mayo told me honestly that they have nothing to help. That’s when I knew this was really serious.
Hi @ashley3764, welcome to Connect. I'm sorry you've been recently diagnosed with CSS . It's a lot to process at first, but can definitely be better managed once understanding the syndrome and learning self-help tools. Sadly, taking more medications is not the quick fix you may hope for.
Have you begun educating yourself about CSS yet? Knowledge is power and so is self advocacy. @dlydailyhope provided a few helpful links in a previous post . Have you had the chance to take a look yet?
You are right, none of my doctors had a clue about CSS either. I understand how frustrating that is. May I ask what type of doctor determined CSS was your diagnosis? Did did they have recommendations for management?
Hello, I was given my diagnosis from the Fibromyalgia Specialist in Rochester. Yes, I have attended the educational videos with mayo. I have decided that most of the medications I was taking was triggering my symptoms. I have been doing meditation and EMDR. I am moving forward with holistic approaches vs medications that are harmful for me.
Hello, I was given my diagnosis from the Fibromyalgia Specialist in Rochester. Yes, I have attended the educational videos with mayo. I have decided that most of the medications I was taking was triggering my symptoms. I have been doing meditation and EMDR. I am moving forward with holistic approaches vs medications that are harmful for me.
What is EMDR and can you please provide more info on what holistic approaches are helping you? I also have fibro and take no meds except for occasional cyclobenzaprine at night.
Also, did you find it helpful to see a specialist at the Mayo, did they provide any good recommendations? Thanks.
EMDR involves a therapist waving fingers back and forth, a hypnosis-like method that elicits a sort of move through time and trauma in the brain. I have done it and was quite surprised at what came up. It is based on science and many therapists do it.
Hello. I have Central Pain Syndrome and do agree that it is horrible. I would not be alive today if I did not use Lyrica and Medical Cannabis to handle the pain. I hope those of you who also have it live in a state where Medical Cannabis is legal.
Be sure to avoid triggers of pain: over-doing it, sugary foods, pepper, msg, insomnia, acidic foods and liquids like vinegar, stress, injuries, caffiene, weather changes (high barometric pressure and low altitude places to live do not trigger the pain near as much as the opposite).
Connect
Connect
Like
Helpful
Hug
@thenazareneshu exactly!
I truly feel for you. To date, my kidneys and liver have been great. I did have some GI bleeding two years ago, but that has been controlled with yet, another pill. I could write a book on how deeply I despise pills. I have not tried the antidepressant route because of the real side affects. Ever other drug has been tried and failed. Nerve pain is REAL, and any doctor that says pain is not a disease is an idiot. Here is where my world opened up. This is a Ted Talk that makes sense in simple terms. This allowed me to have a clear and honest conversation with my pain management team. Knowing is powerful. To learn that this pain is being triggered by a faulty brain switch, is maddening. https://www.npr.org/2017/02/10/514142569/is-pain-a-symptom-or-a-disease
-
Like -
Helpful -
Hug
1 ReactionYes, it is with one exception I have been told. Every pain management doctor including the head of Emory University PM department all stated that spine stimulators have worked wonders for amputees. The difference I believe is that the brain has been mapped so well, identifying the right place to attach the electrodes is simple. With Allodynia, not one of the top surgeons in my area could even confirm which nerve or group of nerves are causing all of this misery. I begged them all to just cut the entire section out, but they refused. Where are the crazy doctors that will do anything for cash. Sorry, I forgot, they all do plastic surgery in strip malls now. LOL! Seriously, even Mayo told me honestly that they have nothing to help. That’s when I knew this was really serious.
-
Like -
Helpful -
Hug
1 ReactionHello, I was given my diagnosis from the Fibromyalgia Specialist in Rochester. Yes, I have attended the educational videos with mayo. I have decided that most of the medications I was taking was triggering my symptoms. I have been doing meditation and EMDR. I am moving forward with holistic approaches vs medications that are harmful for me.
-
Like -
Helpful -
Hug
1 ReactionCBD is great for pain - CBD from the marijuana plant.
What is EMDR and can you please provide more info on what holistic approaches are helping you? I also have fibro and take no meds except for occasional cyclobenzaprine at night.
Also, did you find it helpful to see a specialist at the Mayo, did they provide any good recommendations? Thanks.
I just had a horrible reaction to CBD. Darn!
EMDR involves a therapist waving fingers back and forth, a hypnosis-like method that elicits a sort of move through time and trauma in the brain. I have done it and was quite surprised at what came up. It is based on science and many therapists do it.
Hello. I have Central Pain Syndrome and do agree that it is horrible. I would not be alive today if I did not use Lyrica and Medical Cannabis to handle the pain. I hope those of you who also have it live in a state where Medical Cannabis is legal.
Be sure to avoid triggers of pain: over-doing it, sugary foods, pepper, msg, insomnia, acidic foods and liquids like vinegar, stress, injuries, caffiene, weather changes (high barometric pressure and low altitude places to live do not trigger the pain near as much as the opposite).
-
Like -
Helpful -
Hug
1 Reaction