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).
Yep! I have Fibromyalgia & CFS. A lot of doctors are not tuned into how the brain misfires with fibro and the sensitivity that we have to so many things.
I have found that I get more encouragement from others that battle this than doctors.
Praying for you as you learn to adjust. Doesn't it help you though to absorb this better when you get a name for what's going on with you. It did me. God Bless You as you absorb this.
I have the exact same diagnosis with fibromyalgia & CPS… same exact thoughts and experiences as you. Took way too many doctors and way too many years to finally get the correct diagnosis. It’s extremely challenging physically and emotionally as well. It’s astounding… I’ve been to dozens of the most ‘renowned top doctors’ in SoCal and they either don’t know anything about CPS & fibro or they just flat out don’t believe in it. I’ve gone through years of unnecessary modalities, surgeries, misdiagnosis, etc. A few years back I literally was at the end of my rope…. I’d been suffering for so many years and my body, mind… every ounce of my being were so tired and didn’t have much fight left. I was in such extreme pain 24/7 for over a decade… ended up in the hospital for almost a month. After so many years of researching and trying to find my own answers, I did believe that I had fibro & CPS along with an autoimmune disease. I found a doctor in LA that finally listened and diagnosed me correctly. All my other doctors kept telling me it was chronic pain from degenerative disc disease. I knew it was way beyond that. She agreed. Anyways, turns out that I was right and thankfully I found this doctor that knew so much about CPS & fibro and listened to me wholeheartedly, didn’t let her ego or expertise get in the way of listening to my thoughts and experiences. To this day, her and I continue to work together to formulate a plan to try and manage my pain. Ketamine has been the only thing that works thus far. Also, it is a very intricate balance of adjusting my meds and knowing when to back off a bit because of tolerance and hyperalgesia from the opioids. It’s just so hard to explain to family and friends. No one gets it. They all think it’s the same as chronic pain which of course it’s not or that it’s in my head… even been told I was just trying to get attention which couldn’t be any more infuriating. Who in their right mind would go to dozens of doctors, spend hours upon hours every week filling out forms, arguing w/insurance companies, trying to keep track of all the meds and get things approved, go thru dozens of agonizing modalities, be poked & prodded, way too many ER visits, horrible hospital stays, $1,000’s of dollars, losing my social life, missing out on family time… all that for attention??!!! The nerve. Anyway, didn’t mean to write a novel here😕 sorry for the long rant… I just am amazed to find someone else that has such a similar diagnosis & experience and I’ve just gone thru so much hardship w/this. These are scary diseases to tackle. You have no choice other than to remain strong and have hope that one day there may be more developments on how to manage CPS & fibro better. As much as I hate to know others are suffering with this type of pain, it’s nice to know that I’m not alone in this battle. Hugs to all living with this…. May we continue to be hopeful & strong💕💪🏼☮️
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@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
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2 ReactionsYes, 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.
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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.
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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
3 ReactionsI have the exact same diagnosis with fibromyalgia & CPS… same exact thoughts and experiences as you. Took way too many doctors and way too many years to finally get the correct diagnosis. It’s extremely challenging physically and emotionally as well. It’s astounding… I’ve been to dozens of the most ‘renowned top doctors’ in SoCal and they either don’t know anything about CPS & fibro or they just flat out don’t believe in it. I’ve gone through years of unnecessary modalities, surgeries, misdiagnosis, etc. A few years back I literally was at the end of my rope…. I’d been suffering for so many years and my body, mind… every ounce of my being were so tired and didn’t have much fight left. I was in such extreme pain 24/7 for over a decade… ended up in the hospital for almost a month. After so many years of researching and trying to find my own answers, I did believe that I had fibro & CPS along with an autoimmune disease. I found a doctor in LA that finally listened and diagnosed me correctly. All my other doctors kept telling me it was chronic pain from degenerative disc disease. I knew it was way beyond that. She agreed. Anyways, turns out that I was right and thankfully I found this doctor that knew so much about CPS & fibro and listened to me wholeheartedly, didn’t let her ego or expertise get in the way of listening to my thoughts and experiences. To this day, her and I continue to work together to formulate a plan to try and manage my pain. Ketamine has been the only thing that works thus far. Also, it is a very intricate balance of adjusting my meds and knowing when to back off a bit because of tolerance and hyperalgesia from the opioids. It’s just so hard to explain to family and friends. No one gets it. They all think it’s the same as chronic pain which of course it’s not or that it’s in my head… even been told I was just trying to get attention which couldn’t be any more infuriating. Who in their right mind would go to dozens of doctors, spend hours upon hours every week filling out forms, arguing w/insurance companies, trying to keep track of all the meds and get things approved, go thru dozens of agonizing modalities, be poked & prodded, way too many ER visits, horrible hospital stays, $1,000’s of dollars, losing my social life, missing out on family time… all that for attention??!!! The nerve. Anyway, didn’t mean to write a novel here😕 sorry for the long rant… I just am amazed to find someone else that has such a similar diagnosis & experience and I’ve just gone thru so much hardship w/this. These are scary diseases to tackle. You have no choice other than to remain strong and have hope that one day there may be more developments on how to manage CPS & fibro better. As much as I hate to know others are suffering with this type of pain, it’s nice to know that I’m not alone in this battle. Hugs to all living with this…. May we continue to be hopeful & strong💕💪🏼☮️
Yes, and I don’t feel it’s an accurate dx. I have no pain. I think CFS gets lumped in with fibromyalgia - not helpful.