Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 03-05-2011, 03:50 AM #1
DreaB DreaB is offline
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Confused Update

I have know had my 6th Block and the last 2 didint work that well this one has taken the pain down a noch but of course it is not completely gone. I was speaking with the Dr. that does the blocks and he told me " that I need to start thinkin if the blocks are working well enough to keep doing them and that I should know that nothing will take the pain away completely just make it a little better " while speaking to him he said I may never be able to do my old job again and that I slowly need to ween of the PT, meds and blocks. I WAS SO CONFUSED.....this is my interpetation " GET OFF YOUR AZZ AND GO BACK TO WORK CAUSE YOU WILL ALWAYS BE IN PAIN". I want to go back to work my fear is that the pain will have me calling in regularly and I will loose my job anyway as my profession is driving and I cant take pain meds while doing that. I also asked him where there other treatments and he said now was not the time to talk about it. At my last visit with the PM Dr. I left lookin cause he said to me that it will take a year but all this will go away saying like I wont have CRPS I'm not sure what to do If anyone can share I would appreciate it as although I dont post much I do read lots since I dont sleep well. I forgot to mention that I begin neurontin 7days ago and I'm not sure that is doing anything but I will continue as they said it takes a bit to reach right dosage. I know that Im all over the place, but thats where I am all over the place. THANKS FOR BEING HERE>
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Old 03-05-2011, 09:48 AM #2
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Default I needed to drive also

Dear DreaB
I was a rural mail carrier and was given much stuff i couldn't take and drive or even work. Made my doc mad but he also said if I was hungry enough I could work. I had to cut everything out of my life but work, because it took the rest of the time to recover.

I finally decided one day I couldn't do it anymore because it had spread to my right foot, ankle, and leg and my sense of time was so distorted. I thought I was moving at the same time as always, but I was slower than snot.

I've had 3 and am ready for my 4th block. The second was almost miraculous, the third a bit disappointing but I did get results. I have had to cut everything out and save up steps if I want to do something special. My husband does the groceries shopping, laundry, vacuuming, filling the bird feeders, most times the dishes. I'm trying to just take a shower, get clean clothes on, cook for myself and an evening meal and take care of the mounds of paperwork that comes with a car accident while working. Now I have SSDI, Retirement Disability, WC, 1, possibly 2 lawyers, dr appts, union rep trying(?) to help, HR person, Supervisor from work, Dr billing dept because WC isn't paying the bills, WC accepting my injury but not approving compensation, not working for 16 weeks and not getting any pay, etc., etc., etc.,.

Not a pretty picture when condensed down to black and white words, but I am able to make a life with my husband, and we like soup. My grandchildren are great entertainment, and netflix comes to the door and I can sit here and pick out my movies.

My life is 180 degrees different than it was before the accident but isn't bad. It is really wonderful as long as I stay within the new boundaries that have been set for me.

I don't know your personal situation, but incorporating chronic pain into your life is an ongoing, difficult thing. It changes the rules for everything. But the many on this forum are proof that it can be done, and that joy can be found. Just when you can see no light at the end of the tunnel, a right or a left turn appears and there is light again. I've even learned to stop talking constantly about my pain. I didn't want to before but I was so letting it controll my life, and me not living and having pain. The pain is a bitter pill, but filling your life with so much more beauty and joy will put it in perspective. When I've had a good day with one of my children or grandchildren or my husband, I remember the good parts, the fun we had. I don't remember the pain, don't have to, it followed me home. I'm still learning my limits and I exceed them at least once a week if I'm not careful. And somethings that are not physically difficult are mentally stressful and I've had to withdraw from that also.

Finding the balance. Everyday I ask the Lord to help me be the best me I can be that day. Whether I'm confined, or whether I'm up, I want to be the best I can be.

You have to find your own system. Takes work, no pill, disciplining your heart, soul and mind. Takes time too.

The wounds your Dr inflicted, maybe some of them, after the pain has eased, you can use to help you deal with this horrible thing that has taken up residence in your body.

with prayer and hope for the future,
GramE
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DeesRSD (03-05-2011), DreaB (03-06-2011), edever34 (03-06-2011), gabbycakes (03-21-2011)
Old 03-05-2011, 10:52 AM #3
birchlake birchlake is offline
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DreaB,

Sorry to hear about your situation.

Confusing isn't it? Maddening? Absolutely. And awful darn painful!

I would recommend doing as much of your own research as you can. YOU are your best health care advocate. Especially with such a misunderstood condition as CRPS. Heck, about half of the doctors I talked to knew almost nothing about it.

Don't be afraid to seek many opinions. I think I saw close to a dozen professionals before I was comfortable with my diagnosis and treatment plan. And yes, CRPS can be misdiagnosed; not uncommon actually......

This is a slow process. As is dealing with chronic pain. But there are things that will help; you just need to find out what works for YOU! What works for one may or may not work for the other. Lots of experimentation necessary. And patience, even though that comes with difficulty when you are in pain. It took me about a year to sort this condition out and another year for me to fine-tune my medications and management routine. Today, my life is much better than it was the last two years........

As for the neurontin, as I mentioned, what works for one may or may not work for another. But it is widely used as the first drug to try for CRPS and neuropathic pain in general. It actually works quite well for me and is the "cornerstone" of my medications. Give it some time to work. But if it doesn't, don't be afraid to ask to try something else.

Remember, even though they are doctors and you are the patient, YOU need to drive the bus!

Good luck to you!
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Old 03-05-2011, 05:19 PM #4
SandyRI SandyRI is offline
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Gram e and Birchlake were both right on the money.

After I was finally diagnosed I made it about a year at work. But I was getting worse and worse. When my RSD finally spread into the occipital region of my head and my head hurt all the time I had to stop working. I just couldn't deal. My PCP put me on fentanyl. My RSD eventually spread to the entire right side of my body, although at times I have battled symptoms in both hands and feet.

Ketamine infusions gave me a chunk of my life back, and after a year's sick leave I was actually able to return to work full time. It took many months of waiting for a 10 day outpatient slot with a doc, I traveled close to 300 miles, my family needed to pitch in to help care for me and my kids, and the WC insurance company fought me every step of the way.

Before I tried ketamine I had 8 stellate ganglion blocks, 1 lumbar block, and 8lidocaine infusions. Plus lots and lots of different meds.

It's now been 8 months since I returned to work and I am still doing OK.

The very best of luck to you. XOXOX Sandy
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Old 03-06-2011, 01:13 AM #5
DreaB DreaB is offline
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Default Thanks so much to all

I have decided to take my life back and not let this thing called CRPS take my life and find what works for me....I guess I will return to work in this pain until I can no longer do it. I have decided that I'm worth it and I need to quit lettin it drag me down and I'm going to quit talking about the pain so much but that it hard to do when people constantly ask how your doin then you have to lie so you dont seem like a debbie downer. Thanks again for all the stories , encouragment and blessings from GOD.
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Old 03-15-2011, 01:47 AM #6
DreaB DreaB is offline
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Default Update to the Update

I have had my seventh Block and as with the first 2 it seems to be working. I have also been told by my OS that I would not be able to return to my Job of Injury for at least a year I'm determined to prove him wrong I cant afford to loose my job or medical I cant see it. I'm gonna fight to the bitter end and if after I try it does not work I will conceed, but not before Please pray for me as I go through these trails as I pray for all of you. The last appt. I felt as if the Nurse case manager was the patient and I wasnt even in the room.....grrrrrr
... Other news I have finally consulted with a attorney who reminded me that they dont pay for pain... I expressed to her my concern was for medical care. he will be reviewing my file and advising me if they will take my case. If anyone has advice or info please feel free to ring in.

Quote:
Originally Posted by DreaB View Post
I have know had my 6th Block and the last 2 didint work that well this one has taken the pain down a noch but of course it is not completely gone. I was speaking with the Dr. that does the blocks and he told me " that I need to start thinkin if the blocks are working well enough to keep doing them and that I should know that nothing will take the pain away completely just make it a little better " while speaking to him he said I may never be able to do my old job again and that I slowly need to ween of the PT, meds and blocks. I WAS SO CONFUSED.....this is my interpetation " GET OFF YOUR AZZ AND GO BACK TO WORK CAUSE YOU WILL ALWAYS BE IN PAIN". I want to go back to work my fear is that the pain will have me calling in regularly and I will loose my job anyway as my profession is driving and I cant take pain meds while doing that. I also asked him where there other treatments and he said now was not the time to talk about it. At my last visit with the PM Dr. I left lookin cause he said to me that it will take a year but all this will go away saying like I wont have CRPS I'm not sure what to do If anyone can share I would appreciate it as although I dont post much I do read lots since I dont sleep well. I forgot to mention that I begin neurontin 7days ago and I'm not sure that is doing anything but I will continue as they said it takes a bit to reach right dosage. I know that Im all over the place, but thats where I am all over the place. THANKS FOR BEING HERE>
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Old 03-21-2011, 03:20 AM #7
DreaB DreaB is offline
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nobody readd my new message
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Old 03-21-2011, 09:20 AM #8
SandyRI SandyRI is offline
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I'm sorry you are having such a tough time. Every state has different rules for WC. You should have an attorney advise you on your rights. I also had 8 blocks, after the first few they stopped working for me.

Don't ever give up trying to find a treatment that works for you!! The best of luck to you!! XOXO Sandy
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