Desperation

[Impish]

I'm not going to get into details, other than to say that more letters have arrived, and my pain levels have increased. Again.

 

I never knew how desperate someone could be before RSD. I never knew how badly dealing with an adversarial system could impact a person's emotional health until RSD.

 

Its been bad enough losing the majority of the function in my dominant hand and arm, coupled with feeling like there are razor blades and broken glass set on fire instead of blood, bone and tissue in my arm. As stupid as it is, there have been moments where I look at my arm, expecting to see jagged broken glass pointing up just under the skin.

 

All of that is bad enough. Dealing with one of the worst people in an adversarial system makes it so much more horrid.

 

The most recent issue is that my presence may once again be demanded for a month or more, during the day. Homeschooling, religious beliefs, that I never worked day shifts so that I COULD homeschool...none of that matters.

 

And no, it doesn't matter to lawyers either. Btdt.

[Pink Fairy]

I'm so sorry you are going through all of this. Add in the crazy hag and it must be impossible to bear at times. :grouphug:

 

My family and I will pray for you.

[Impish]

Thank you.

[coffeefreak]

I am so sorry. I don't know the pain you have, but I know what it's like to be debilitated. I will pray for you. :grouphug:

Blessings!

Dorinda

[5KidzRUs]

One morning I woke up and my arm was paralyzed from the elbow to the shoulder - I had the WORST pain - horrible pain. It lasted a little over a month and no pain meds could help. The ER docs could do nothing and I tried to give them all the pain pills back. What is the big deal about oxycontin, coedeine, and all those drugs - they were like plesebos for me - I threw them away when the ER would not take them back. Finally, one surgeon told me it was a torn rotator cup and the ONLY way to make the pain stop is surgery.

I just started swimming every day - and after a while I regained use of my arm and the pain went away.

 

I do not know what RSD is - but it sounds worse than what I had. I am so sorry for your pain and I want you to know my heart, thoughts and prayers go out to you. I hope that you are able to get relief from the pain and from the ugly people that are trying to trip you up.

[2cents]

I'm sorry. :( I hope that things turn around soon.

[Denisemomof4]

:grouphug::grouphug::grouphug:

 

is there any chance of healing like a pp said happened to her through early treatment?

 

Have you spoken to a LAWYER? If you were injured at work and WC isn't cooperating, don't you have any rights?

 

I, too, have chronic pain but NOTHING like you imagine, and not 100% of the time. I'm really sorry. It must be miserable.

[Impish]

:grouphug::grouphug::grouphug:

 

is there any chance of healing like a pp said happened to her through early treatment?

 

Have you spoken to a LAWYER? If you were injured at work and WC isn't cooperating, don't you have any rights?

 

I, too, have chronic pain but NOTHING like you imagine, and not 100% of the time. I'm really sorry. It must be miserable.

No. I've had pretty much all treatments available. RSD is something that doesn't respond the same way to treatment. What works for one won't work for the next 100, and vice versa.

 

Lawyers won't get involved unless/until I lose all my compensation coverage (pay included) and its an appeals situation. Til then, I get told to be grateful they're still paying me. :glare:

 

The best hope of RSD responding to treatment is in the first six months of it starting. I've been dx with it now for over a year. Basically the only thing to do is swallow the meds, keep up the infusions and pray.

 

Here's a link that explains chronic stage RSD, which is where I'm at.

http://www.rsdcanada.org/parc/english/therapy/drvanderlaan.html

[Impish]

Just so you don't have to wade through tonnes of medical speak...

 

In the chronic phase of CRPS (for one year or more after onset), the neurological complaints increase in severity and are more prominently present. Incoordination, tremor, involuntary movements, muscle spasms, and posture abnormalities may occur in this phase. The postural abnormalities include dystonia (a fixed abnormal posture of the extremity such as hyperflexion of the wrist or fingers, or inversion and plantar flexion or extension of the foot) and myoclonus (involuntary jerk-like movements produced by muscle contraction). Sensory disturbances may include anesthesia dolorosa (severe pain present in the anesthetic area). These neurological deficits may lead to severe additional disability, untreatable pain, and a non-functional extremity

[PineFarmMom]

:grouphug::grouphug::grouphug:

 

I'm so sorry. :( I'm praying for you!!

[Tracy in Ky]

I know your pain. I was diagnosed with RSD after my hysterectomy in Dec 2004. I had never heard of it before. Evidently the trauma of the surgery caused it--in my right hip/thigh/back area ( a large tumor in my uterus was the reason for the surgery; it was done vaginally and was a very difficult and violent surgery. It should not have been done vaginally). Horrible pain. I was practically an invalid. Clothes hurt so badly.

 

I started intense physical therapy, along with some homeopathy and lots of prayer. My pain quickly diminished, and today I have only residual nerve hypersensitivity in that area--so much so that if I am sitting down, and someone sitting beside me barely touches that part of my leg, it is unbearable. If I touch it, it is like electric currents almost, running along my thigh. Weird. But the pain, other than being touched, is completely under control, and has been for years. Clothes no longer hurt.

 

All that to say that I am so sorry you are experiencing this. I remember how badly I hurt. It was so, so, so painful. And I couldn't make it stop.

 

The best thing for the pain I found in PT was electrical stimulation. They would hook electrodes up to me for a long time, then I would have several hours with diminished pain. I remember how it felt afterwards: what a relief. Can you try PT?

[Impish]

I had three extended rounds of PT at three different places. 'Goal Not Met' was the result.

 

In fact, one of the places was before the RSD dx, and was using a TENS machine, believing it to be a strain/sprain (initial dx, followed by an MRI showing a partial shoulder tendon tear, followed by RSD). I don't half wonder if the use of the TENS machine early on was what caused my RSD, since it is a nerve issue, and TENS directly stimulates nerves.

 

Probably not, since the pain was pretty constant, but initially I *did* get relief from TENS, followed rapidly by it making things hugely worse in later treatments.

 

Again, back to 'what works for one doesn't for another'...which, coupled with the visible/quantitative signs of RSD fading with time, but the pain not going with them...indeed, even increasing.

[Aubrey]

Again, back to 'what works for one doesn't for another'...which, coupled with the visible/quantitative signs of RSD fading with time, but the pain not going with them...indeed, even increasing.

 

I imagine this is the most frustrating part. But I don't have a clue, & so I usually just read your posts, wish I had *something* helpful to say, & keep my mouth shut--because I don't.

 

But I at least wanted you to know that I sort-of follow your posts. The whole thing stinks.

 

And even if it turns out there's buried treasure under my house, it sounds like that wouldn't help a bit. (Actually, there *was* buried treasure, but the "treasure" was dirty plastic kid toys. Disappointment of my life.) :lol:

 

:grouphug:

[Impish]

If I were able to find a job that only required 'breathing' as a task, and for me not to have to be anywhere to do so, AND paid me what I was making before, I could get a reprieve from WCB...'cept I need the med coverage.

 

*sigh*

 

Did I mention that case mgr ALSO sent my work a 'modified work check list'??? This despite NONE of my drs saying I'm fit for ANY level of employment :banghead::banghead::banghead:

 

And Aubrey, thanks for responding. I appreciate knowing that someone is reading the insanity that is my life :lol:

[Renee in NC]

I know your pain. I was diagnosed with RSD after my hysterectomy in Dec 2004. I had never heard of it before. Evidently the trauma of the surgery caused it--in my right hip/thigh/back area ( a large tumor in my uterus was the reason for the surgery; it was done vaginally and was a very difficult and violent surgery. It should not have been done vaginally). Horrible pain. I was practically an invalid. Clothes hurt so badly.

 

I started intense physical therapy, along with some homeopathy and lots of prayer. My pain quickly diminished, and today I have only residual nerve hypersensitivity in that area--so much so that if I am sitting down, and someone sitting beside me barely touches that part of my leg, it is unbearable. If I touch it, it is like electric currents almost, running along my thigh. Weird. But the pain, other than being touched, is completely under control, and has been for years. Clothes no longer hurt.

 

All that to say that I am so sorry you are experiencing this. I remember how badly I hurt. It was so, so, so painful. And I couldn't make it stop.

 

The best thing for the pain I found in PT was electrical stimulation. They would hook electrodes up to me for a long time, then I would have several hours with diminished pain. I remember how it felt afterwards: what a relief. Can you try PT?

 

My Dad has this in one leg also due to a violent surgery (in his back) and it didn't go away until he had a neurostimulator implanted in his back 2 years ago. He has been able to totally get off the pain killers and doesn't walk with a cane anymore!

[Impish]

My Dad has this in one leg also due to a violent surgery (in his back) and it didn't go away until he had a neurostimulator implanted in his back 2 years ago. He has been able to totally get off the pain killers and doesn't walk with a cane anymore!

Because TENS didn't do anything but worsen the pain after a few treatments, I don't think I'm a candidate for a neurostimulator.

[Renee in NC]

Because TENS didn't do anything but worsen the pain after a few treatments, I don't think I'm a candidate for a neurostimulator.

 

I was really answering Tracy, not suggesting another treatment for you Impish.:grouphug:

 

A TENS unit on the outside didn't do anything for my dad, either. He even had the temp neurostimulator placed twice - the first time the doctor placed it wrong and it made things worse. Another doctor convinced him to try again, because my father was adamant that he no longer wanted to be dependent on narcotics. His surgery was in 2002 and his perm. neurostimulator was placed in 2007, so he lived with the agony for several years. He has found relief, though, and is able to do everything he used to.

[Joy at Home]

I never knew how badly dealing with an adversarial system could impact a person's emotional health until RSD.

 

The most recent issue is that my presence may once again be demanded for a month or more, during the day. Homeschooling, religious beliefs, that I never worked day shifts so that I COULD homeschool...none of that matters.

 

 

Impish,

 

Do you mind elaborating on this? I've been following on your medical issues and pain, but what else are you dealing with regarding this "adversarial system"?

 

I'm sorry you have to go through this. Chronic pain and loss of use of your arm must be too much to bear at times.

 

Blessings,

Lisa

[Impish]

I was really answering Tracy, not suggesting another treatment for you Impish.:grouphug:

 

A TENS unit on the outside didn't do anything for my dad, either. He even had the temp neurostimulator placed twice - the first time the doctor placed it wrong and it made things worse. Another doctor convinced him to try again, because my father was adamant that he no longer wanted to be dependent on narcotics. His surgery was in 2002 and his perm. neurostimulator was placed in 2007, so he lived with the agony for several years. He has found relief, though, and is able to do everything he used to.

Narcotics don't do much for me at all. Take the edge off, and with the ones I'm on now, I've noticed a decrease in the 'please God, kill me' days. Not the overall pain mind you, but less of the 15/10 days on the pain scale.

Impish,

 

Do you mind elaborating on this? I've been following on your medical issues and pain, but what else are you dealing with regarding this "adversarial system"?

 

I'm sorry you have to go through this. Chronic pain and loss of use of your arm must be too much to bear at times.

 

Blessings,

Lisa

Lisa, I'm trying not to get another thread closed, so I'll PM you. I had one closed last night, not really sure why, so I'm avoiding as much detail about anything other than RSD as possible.

[Renee in NC]

Narcotics don't do much for me at all. Take the edge off, and with the ones I'm on now, I've noticed a decrease in the 'please God, kill me' days. Not the overall pain mind you, but less of the 15/10 days on the pain scale.

 

Lisa, I'm trying not to get another thread closed, so I'll PM you. I had one closed last night, not really sure why, so I'm avoiding as much detail about anything other than RSD as possible.

 

My dad had pain patches that worked the best - he changed them about every 2-3 days. I can't remember what the name is, but if I remember I will let you know. He limped from pain and if anyone touched him he would scream it was so horrible! He also had pain patches that went on his feet that were topical pain killers so that he could wear shoes.

[Denisemomof4]

I also keep my mouth shut because I don't know what to say. Once I read what RSD was, you had my full sympathy (not that that matters) ;) as is sounds quite impossible. I can't even imagine.

 

And I don't understand why you're not being taken care of.

 

Life, and this world, are so unfair sometimes. Really.

[Sue G in PA]

Imp, I'm praying for you and will keep praying. I wish something I could say would make it all better. I don't have physical pain so I cannot relate. There are times when my emotional pain is so intense it physically hurts, but that can't touch what you are going through. :grouphug: and lots of them...I wish I were closer to give you one in person and pray for you in person.