DB CRPS

@stonediggidy
Community Voices

I’ve recently developed the ol’ “can’t catch my breath” symptom of CRPS. Originally, I thought it was the air quality, or dog allergies, but a small voice in my head considered my disease a factor. I went to my doctor, and he said I was getting enough oxygen, and my breathing sounds fine. He said it was probably withdrawal symptoms from lowering my doses (a day or two before the breathing issue started, I had lowered my painkillers by half).

He gave me anti-anxiety pills, and said to not lower my dose without a doctors help. But come to find out, CRPS is commonly related to this breathing...

10 people are talking about this
Community Voices

I’ve recently developed the ol’ “can’t catch my breath” symptom of CRPS. Originally, I thought it was the air quality, or dog allergies, but a small voice in my head considered my disease a factor. I went to my doctor, and he said I was getting enough oxygen, and my breathing sounds fine. He said it was probably withdrawal symptoms from lowering my doses (a day or two before the breathing issue started, I had lowered my painkillers by half).

He gave me anti-anxiety pills, and said to not lower my dose without a doctors help. But come to find out, CRPS is commonly related to this breathing...

10 people are talking about this
Community Voices

I’ve recently developed the ol’ “can’t catch my breath” symptom of CRPS. Originally, I thought it was the air quality, or dog allergies, but a small voice in my head considered my disease a factor. I went to my doctor, and he said I was getting enough oxygen, and my breathing sounds fine. He said it was probably withdrawal symptoms from lowering my doses (a day or two before the breathing issue started, I had lowered my painkillers by half).

He gave me anti-anxiety pills, and said to not lower my dose without a doctors help. But come to find out, CRPS is commonly related to this breathing...

10 people are talking about this
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This is me.
#CheckInWithMe

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106 people are talking about this
Community Voices

Are there any good online resources that help teach manual therapies for CRPS/chronic pain? #ComplexRegionalPainSyndrome #PhysicalTherapy

I can’t afford the kind of physical therapy I need, and the VA doesn’t cover/provide it. So, I need to find ways to manually therapize from home. Anyone know of good CRPS exercise techniques or sites that teach them? Or maybe YouTube videos? #help #pleasehelp

5 people are talking about this
Community Voices

Are there any good online resources that help teach manual therapies for CRPS/chronic pain? #ComplexRegionalPainSyndrome #PhysicalTherapy

I can’t afford the kind of physical therapy I need, and the VA doesn’t cover/provide it. So, I need to find ways to manually therapize from home. Anyone know of good CRPS exercise techniques or sites that teach them? Or maybe YouTube videos? #help #pleasehelp

5 people are talking about this
Community Voices

Are there any good online resources that help teach manual therapies for CRPS/chronic pain? #ComplexRegionalPainSyndrome #PhysicalTherapy

I can’t afford the kind of physical therapy I need, and the VA doesn’t cover/provide it. So, I need to find ways to manually therapize from home. Anyone know of good CRPS exercise techniques or sites that teach them? Or maybe YouTube videos? #help #pleasehelp

5 people are talking about this
Community Voices

I Have Cronic Pain and I Am Against Opiates

I know I’m about to open a can of worms but I think it’s a van worth opening.

I have lived with #ChronicPain for most of my life and I am staunchly against long term use of opiates. Here’s why:

When I was in my early teens, I came down with a #Headache that lasted for 9 months straight. It got worse and worse until my doctor thought to do a CT looking for a tumor. He found none. The neurologist said it wasn’t a #Migraine but also said there wasn’t a logical explanation for it. I was in excruciating pain, though, so after trying a myriad of pharmaceuticals, I was prescribed opiates for the first time. I took them daily as prescribed and went through high school high because it was the only thing that dulled the pain…

But it was only masking the pain, not treating the cause.

When I was 18, I broke my back horseback riding. It wasn’t a break of the vertebrae around the spinal cord but breaking the transverse processes off the side of three vertebrae in my lower back and tearing all the muscle in one side of my back from my hip to my shoulder blade. I was young and healthy so I wasn’t kept in PT long because the thought was that because I was able to do what they asked, I didn’t need more PT. Nevertheless I was ravaged by pain and the solution was to add more opiates and muscle relaxers to the mix…

But they only made the pain tolerable, not stopping it or addressing the underlying issue.

For probably 15 years this went on. Pain, drugs. More pain, more drugs. Different pain, different drugs. Increasing doses and cocktails to keep the body pain free… sort of. I didn’t like how the rest of me felt on them but they stopped the pain and that was all I was after. But they never hit the ultimate cause of my pains and the only treatment I was offered was pharmaceutical.

By the time I hit my early thirties, I had realized that there had to be more to treating my ailments than just taking drugs. When I suddenly became ill from everything I ate, they offered a prescription painkiller for my digestive track… But I didn’t want another pill. I wanted an answer. I fasted for a period of time and kept meticulous notes on what foods gave what reactions as I slowly added food to my diet again and I found culprits: gluten, soy, and meats. I brought that back to my GI doctor and he dismissed me: I didn’t have allergies or diseases related to those particular foods. But eliminating them made me feel much better than his drugs did, so I expanded my search for answers.

I wanted a solution to the cause not thr effect.

When my arm suddenly swelled one day and I ended up with a blood clot down the length of it and in my left inner jugular, I wasn’t satisfied that the ultimate answer was just a case of Paget Schroeder with a fix of having my first rib amputated. I mean, I let the amputation take place but when I was in post op there was NOTHING they could give me for my pain. Everything they gave me caused me more pain or caused me to feel like I was on fire. I was in agony and the drugs that were supposed to help me could only make me worse. In my #Delirium I somehow figured out that I was worse when they gave me another shot of drugs so I started screaming at them to stop and refusing their pain meds, asking only for Tylenol. The pain started to subside! I couldn’t understand what was happening but I knew it was big.

The removal of my rib did not remove the swelling present in my arm and by that point, I did not stop seeking answers because I had grown tired of “simple” solutions. That was when someone finally tested my blood for antibodies that cause clotting and discovered I have antiphospholipid antibody syndrome. But no one could tell me why the pain meds made me feel agony.

It it has taken years to learn all that I have about my body and my conditions. Finding a way to end pain is very alluring but I’ve learned to live with it instead because there are worse things than the pain I once sought to cover up.

The cause of the headache that never stopped was microthrombolytic clotting in my brain and my body that eventually caused so much damage to my small fiber nerves that I now live with multiple forms of dysautinomoa and chronic pain related conditions, most of which may have been prevented had they sought and treated the cause of APS rather than simply addressing the effect of a headache with opioids because they were the only things that worked. I now have damage that is irreversible that will impact my everyday for the rest of my life because we treated the effect not the cause.

The cause of the pain in my back was the twisting of my hips and uneven gait that were the result of tearing all the muscle on one side of my back and not the other. It shouldn’t have mattered that I could stand up and walk because my body wasn’t strong enough and I didn’t know enough about anatomy to realize what a musculoskeletal nightmare was being created by not addressing the muscle weakness and injury where they were then but by just masking the pain. I now fight to hold my body upright and need to have frequent adjustments because my hips are still twisted from the recovery from that injury 18 years later.

The reason I felt like my body was on fire when I was in recovery after having my rib amputated was that after 20 years of responsible opiate use for chronic pain I had developed both opioid hypoalgesia and opioid hyperalgesia. One makes one not responsive to opiates, one makes one’s response to opiates agonizing pain. I have both depending on what is prescribed. It is only due to recovering from probably 15 surgeries since learning of the algesias that I have been able to narrow what opiates may be used if absolutely necessary. It is a very short list and I only default to it if a nerve block and standard antiinflammatories don’t work enough with the homeopathics I now swear by for all my pain.

I’ve has hospital staff call security because I refused the opiates they tried to give me.

I’ve had doctors try to cancel procedures because I refused.

I have had people ask me if I’m crazy for not wanting the drugs.

I have learned with much research and from having worked with a pain psychologistc, Dr. Ben Kaiser, what damage I did by trying to treat pain instead of focusing on understanding it and on treating the underlying causes. It wasn’t always my fault that the source wasn’t being looked for, but I could have done more sooner and I wish I had.

The opiates I took to ease the pain did more harm than good and I wish the medical system had done more to help me treat the cause to begin with rather than making me a statistic in the opiate crisis I recognize.

I have lived with chronic pain for almost 25 years and I rue the day I ever was prescribed an opiate.

32 people are talking about this