[Cathy]

I wasn't going to start a new thread, but after reading so many helpful posts, I decided I'd better. It's nice to see so many names I recognize...lost the site for a long while...our work has blocked us from so many things presently...such a lovely world we live in...

I was diagnosed with RSD/CRPS in 2004 after a broken hand from a car wreck. The orthopedic doctor I was seeing was not a very nice lady and indeed before my case was cemented, she closed her practice. There was a dent in my cast that I believe was the cause originally - that when removed my hand continued to swell even with PT with a hand specialist. So much information was thrown at me that I didn't know what to do. The pain management specialist she told me to see was a man I didn't particularly trust (now I feel very differently about him). The chiropractor I was seeing talked me into seeing him (he actually turned out to be the bum). As I was being told, unless you get this stopped in the first 30 days, you're pretty well beat. Mine was also W/C and although I had to fight every step of the way and felt humiliated when I had to see their doctors (who, by the way were SO very much more human and sympathetic than I ever would have believed). I did have a lawyer who was a very nice man, but involved in many larger 'city' cases and I had to almost pretty much do that myself too; but it made me stronger in some respects but much less trusting of people all around. That hurts my heart, but forgiveness comes and goes - as does the pain.

2007 - My husband and I took care of my mom for the 15 months before she died and on a trip to visit my sister, who died 5 months later, I took a BAD fall on my knee.

In the recurring 3 years, I've had MRI's of my back (Lumbar) and left knee, numerous visits to doctors; more pain shots for my back, which were helping and the office just didn't call me back so I gave up them. When my hip, leg and back got so bad, I went back to a physical therapy doctor's treatment center who talked me into IDD traction treatments, which along with physical therapy was working. After the initial (very expensive) 15 sessions on my back, I was supposed to go monthly for a year and then quarterly. This is all out of pocket as insurance didn't cover this treatment. The actual physical therapy was covered; however, we are allowed 20 treatments for the year and he was supposed to get permission to add on some treatments for my hip and leg...the plan all along. On the 5th month's follow up treatment something seemed to go wrong. My back got almost as bad as it was in January (2010) when I started it. Also after waiting 4 months all I got was a verbal - insurance will not cover any more tretments. I've called their office and I just don't hear back. So very disappointing what human nature has become. So here I am...it is now October and I seriously believe I have a flare of the RSD again. I'm scared. I need to continue to work but it is difficult with so much pain to contend with; it's difficult to concentrate. From the beginning I always thanked God that what I was dealing with could not be seen, that I could handle this with grace. Now I'm not so sure. I turned 60 in June and it felt like - okay you're old - 'cause all of a sudden I feel like my body has turned on me.

In 2007 I was diagnosed with Fibromyalgia of which the exhaustion is the worst of it. I read on another post of someone's that their legs get red and hot and burning. Well, how smart was I...Because I've been told that my right thumb joint or below it is now diagnosed as arthritis (osteo) and bursitis as well as my back and knee and the hip??? no one says anything about the hip. Just keep moving and stretching. VERY difficult to do when you're so tired at night all you want to do is sleep and then keep waking up because I can't get my leg comfortable. Well, I do have a glass of wine at night and have gone back to smoking, but...my knees and feet get very hot and red and I just put that down to the arthritis. Now that my left hand is acting up (up to above the elbow now), I'm wondering if it isn't the RSD going haywire all over?????? I'm feeling somewhat lost and discouraged. The more it seems I work at getting better, the worse I seem to get, and no I am not exercising enough and I'm probably not taking enough pain med. The PT doc put me back on neurontin, which I got on okay, but with loss of equilibrium and memory, I finally took myself off it a couple of months ago which was a b**ch. I was just so mad at him. He also had suggested a liquid medication that was Ketaprophen that the pharmacy had to make. When my hubby went to pick it up it was OVER $500 - DID NOT Get That...they did manage to make another one much less expensive but I never finished it...I didn't know what if anything it was doing.

So...on and on I go; sorry...I didn't plan on it. Thanks for listening and being out there. I'm grateful for that. cathy

[daniella]

Hi cathy. I am sorry for your pain. Are you currently seeing someone for the pain? Are you on any meds?
You said after the 5 month something went wrong can you decribe more about that?
You stated you have fibromyalgia have you tried Lyrica which is similar to neurontin?
My thought is with all that is going on to see a doctor. Have you seen a neurologist? If not I would or possibly again with the new symptoms. For me my initial testing with my neuro did not show but then I had more extensive and that dx with me with PN and of course the RSD.
Feel better.

[Cathy]

Originally Posted by daniella

Hi cathy. I am sorry for your pain. Are you currently seeing someone for the pain? Are you on any meds?
You said after the 5 month something went wrong can you decribe more about that?
You stated you have fibromyalgia have you tried Lyrica which is similar to neurontin?
My thought is with all that is going on to see a doctor. Have you seen a neurologist? If not I would or possibly again with the new symptoms. For me my initial testing with my neuro did not show but then I had more extensive and that dx with me with PN and of course the RSD.
Feel better.

I wrote a big long answer, but had to keep stopping and now it seems it is lost. I will try again latter. I knew I should have printed.

[loretta]

Originally Posted by Cathy

I wrote a big long answer, but had to keep stopping and now it seems it is lost. I will try again latter. I knew I should have printed.

Hi Cathy & Welcome, How frustrating, I've done that more than once.
The skin redness and heat are signs of RSD.It is more common than not for RSD to spread, many times of which we have no idea how that comes about. Like Daniella mentioned, a good neurologist familiar with RSD is a good option.
There is a lot of good information on rsdrx.com Dr. Hooshmand, now retired, has 40 years of experience and his website is very informative. especially puzzles list-150 questions from rsd patients and his answers.
Also RSDSA, is good, put your zip code in and can fine closest support group who are usually aware of local knowledgable Drs.
Is your WC still open? RSD is very expensive as we go along. I have full body or generalized and internal RSD. 15 years of RSD- I'm 62 years old and trying to get SSDI. There is a compounding pharamacy in Florida that makes a gel with ketamine, anti-inflammatories, lidocaine and is $35 and $400 thru insurance co. I am now researching this med with my Dr. and a local pharmacy. I forget who on this site told me about it, but can research it and let you know. I have the address of pharmacy and name etc.
Just let me know. You can Private Message anyone here by pushing Your Notifications on the upper right hand corner, then next site push Private Messages that is on the left hand side in the middle.
I hope you get some help soon. What has kept me mobile is physical therapy , swimming 86 degree water. stretching, and massage therapy. I am mobile except for left hand -fingers are frozen like a claw. Therapy was delayed because of misdiagnosis and delayed therapy. I'm so grateful to be mobile and do the best I can exercise wise. Take care, one of your new friends, loretta with soft hugs

[finz]

Hi Cathy,

Welcome to Neurotalk, although I'm sorry you've had to find us here

I hope that you can find some suggestions to ease your burden a bit

[Cathy]

Originally Posted by daniella

Hi cathy. I am sorry for your pain. Are you currently seeing someone for the pain? Are you on any meds?
You said after the 5 month something went wrong can you decribe more about that?
You stated you have fibromyalgia have you tried Lyrica which is similar to neurontin?
My thought is with all that is going on to see a doctor. Have you seen a neurologist? If not I would or possibly again with the new symptoms. For me my initial testing with my neuro did not show but then I had more extensive and that dx with me with PN and of course the RSD.
Feel better.

Hi Daniella, Sorry I couldn't get back till now. Let's see: I had been thinking for a while that I might see a neurologist or a rheumatologist for the Fibromyalgia. I do have a pain management doctor that I was going to call, but the flare up has subsided somewhat and I figured I'd better keep those stellate ganglion shots for serious days that may be ahead. I don't remember a lot of what I read, but somehow remember that too many of those shots could end up not being so good. Don't know. I think also that my body is just too mixed up now to start something new. I do a lot of small hand activities at work and it is tax season and that hasn't helped.

I did try Lyrica (hands and feet swelled and gained weight) I stayed on it, but just ended up taking 75 mg in the am. He (PT doc-2005) wanted me to get to 100 mg 3x's a day, but I couldn't. Then I had to see a foot doctor for bone spurs on the top of both feet. He injected me with cortisone in each foot and they swelled and blistered - after 4 days of seeing him everyday he sent me to ER which did absolutely nothing and he won't touch me again. He just thought the whole episode was bizarre and this from a man who said he knew everything about RSD. To be a 'little' fair to him, my family doc also said it didn't present like RSD. So we put it down to an allergy to cortisone...and the list grows.

Recently with my back issues, I went back on neurontin, but it just frys my brain. I believe it's a good medicine, but taking just 300 mg a day, still had me forgetting more than I should be.

As far as the IDD 5th month treatment; I have no idea, but I think there was something amiss maybe with the machine. I thought when I called in he might double check the print out and see if something looked strange, but nothing. So whether or not there is blame I'll probably never know. All I do know is that by the time I got home my back was hurting more than it had in the weeks previous to that visit.

I've seen a cardiologist as my blood pressure was getting higher as well as cholesterol being high. That's genes, but I think the pressure must have something to do with the pain, verified by some of the posts on here and this week my husband is suffering with a bad bout of diverticulitis and his pressure hit the roof.

Loretta, thank you for the welcome and your suggestions. I think I'll wait on the compounding pharmacy for now, but am grateful for your suggestions and offer of help. I know I should be exercising more and looking into the water therapy...but...I just want to crash at the end of the day and just want to sleep on the weekends. My husband has been very understanding, but if and when I do go out on Sat. I'm more bushed than ever.

Oh meds...Currently I take darvon with 3 advil in the morning and sometimes a darvon with 2 advil in the afternoon. When I get home I take a Flexeril and then elavil (10mg) and a anxiety med just so I'm sure to sleep. It's difficult to find a med that agrees with me.

I guess I should end for now with my heartfelt thanks and prayers for your easing of your pains. cathy