I've been thinking of trying an on-line business as well. I think I'd feel a lot better if I were just doiing something to earn some money and feel more useful. My biggest fear is that it would be highly successfull and I'd have to hire help and it would get stressful. Then, of course, I'd lose my income since I'm doing so well and the business would go belly up.

Everything just seems to come back to fear for me.

I just might really do it one of these days since I'm sure it would be fun and I could use a lot more fun.

Hi MsL,
I saw that you wrote that you have pamidronate infusions. What are they. I am looking for options to discuss with my neurologist when I have my appt in Oct.
Hope you are having a good day.
hopeful

It's not a drug to play with, primarily used for bone cancer patients. It is a bisphoshonate drug which is under investigation for use in RSD patients. My doctor stopped using it after my reaction and there is no clear evidence that it works for RSD.

Like I said I had a very severe allergic reaction to it, more than the flu like symptoms that's described in the attached document describing it. http://www.cancercare.on.ca/common/p...x?fileId=10683 I Know there is a study out there about it's affects on RSD patients but I can't find it right now.

I lost my hearing partially in one ear, the blood vessels in my opposite eye all burst and I have a permanent ringing noise, sometimes loud, in my head that makes it difficult for me to hear especially when there is any type of background noise. That being said I did have a temporary reprieve from the deep bone pain I initially complained about. Was it worth it NO! I'm not able to take any other drug in that class, I was taken off all the osteoporosis drugs and can't try any new ones. Not good news for an RSD patient who isn't even yet past menopause.

It was the second infusion that took me over the edge and landed me back in emergency at the same hospital I received the infusions. I ultimately had to resort to a doing a "sit in" at the waiting room of the ENT clinic insisting that the head of the department see me so I could get some help. The emerg department had released me with a shrug of their 3rd year resident shoulders claiming it was merely a migraine. I suffer from migraines so I knew that there was much more to it than just that and I was really sick and scared.

I did get help ultimately, including oral steroid, steroids injected directly into my ear drum and HBOT. The loud explosive motor sound is now down to a low buzzing noise that no longer makes me want to cut my ear off. I now know why Van Gogh did that, it had nothing to do with him being crazy, it's said that he suffered severe tinnitus too and it is that relentless sound that drives one crazy. I'm so grateful it has subsided to a dull roar.

I wish you well with your up coming appointment, please let us all know how it goes for you. I just can't recommend this particular drug.

MsL

LOL I have the same fears!! I keep telling myself that I could grow to the point where I would only manage people, and from there it would be a cake walk.

Then the casino memories come back with all 250 employees....err babies, needing their pampers changed everyday LOL!! Well it wasnt that bad, but it was on some days. Then I think all I have to do is find one good manager to over see everything, and he would answer to the board/owner.

Plus with todays technology I could look at every business detail as it was being done with just a key stroke, or even on a cell phone for that matter.
So it wouldnt really be that bad I dont think. It would be nice to make enough money for everyone to take a nice vacation to your place!

Hi folks. I for one had an entirely positive experience with a newer cognate of pamidromate called Zometa. Specifically, it has been the best (and only) treatment for the "deep bone crushing pain" in my ankles. Taken in periodic infusions in my pm doctor's office, that specific pain has gone 40% (or less) of what it once was. That said, it hasn't done anything to speak of for the constricting pain in my ankles, the burning pain and tightness in my feet, the sense that my toes have been worked over by hammers or crampping thought my legs and, sometimes, body. But, the deep bone crushing pain was the worst thing I had going, bar none.

Zometa (zoledronic acid) here's a link to the current U.S. prescribing information sheet: http://www.pharma.us.novartis.com/pr...pdf/Zometa.pdf The allegergic reaction which Mslday mentions appears may be referenced at Sec. 6.2 of Zometa's prescribing information sheet, but comparing it to the sheet she posted on Pamidromate - as well as not only my experience but what I understand that of my treating physician's to have been as well - I would have to say that if Zometa is its cousin, it is far more benign. That said, Zometa should never be used be anyone in need of "significant" dental work where it may lead to "jaw necrosis." Accordingly, most good pm docs require pre-clearance from a dentist. Also, bear in mind that because of a risk of renal toxicity, as measured by increases in serum creatinine (Section 6.1) periodic and very basic metabolic blood panels are required while you're using the drug: your blood is tested before every infusion. (Another difference between Zometa and pamidromates, so far as I understand it, is that the Zometa can be infused through an iv line in 15 minutes as opposed to the pamidromates' 4 hours.)

That said, pamidromates in general have been shown for some time to provide relief from CRPS. See, "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Med. 2004; 5:276-280, full text at http://www.rsds.org/2/library/articl...e_Robinson.pdf I suspect this is the article Mslday had in mind.

Unfortunately, in the U.S., Zometa's FDA approved use, to prevent the uptake of bone material into the bloodstream, primarily associated with multiple meloma, it's dosed at approx. 5 ml. On the other hand, for CRPS it's given at I believe 60 ml. This has been used of late as the basis for my insurance co. to deny reeimbusement for it's use (at approx. $900 every six months) after three years of no questions asked coverage. The matter is currently on appeal, so we shall see what happens.

Finally - and I've posted this before but it's worth repeating - for a recent "review" article on the use of Biphosphonates - the broad chemical name for the group of drugs - which has the feel of a "work for hire" (and because it's published in Europe there are no manditory disclosures of "competing interests") see, "Biphosphonates for the therapy of complex regional pain syndrome I—Systematic review," Brunner F, Schmid A, Kissling R, Held U, Bachmann LM, Eur J Pain 2009;13:17-21, full text at http://www.rsds.org/2/library/articl...d_Kissling.pdf. The article goes so far as to question the use of this therapy because it's not in the "current" (1998) guide to consensus practice that predates all but one of the four studies that have found this class of drugs useful, and then suggests that one should never rely on a "mono-therapy" in the treatment of CRPS when the Robinson article - above - makes just that same point!

For what it's worth.

Mike

Hi,
Thanks for the info. I don't think I will ask him about that treatment. It doesn't sound like something I want to chance.The last thing I want is another aliment. Did the HBOT work for you. I have seen people talk about that on this site. I think some people get relief from it. Sometimes I feel so desperate I would give anything a try but I know that is not the right thing to do.
Good for you sticking up for yourself like that with the ENT! That takes a lot of guts!
Hopeful

Hi Hopeful,

I can't really say that it did or didn't help. There were so many things going on with my body at that time and the primary reason I was given the opportunity to do the HBOT was because of the severe tinnitus caused from the pamidronate. I was also put on the oral steroids. I frequently felt deep bone pain in my rsd leg as we were descending in the chamber and I would suffer vertigo after the dives were finished, probably something to do with the inner ear damage caused by the pamidronate. After the 20 sessions were said and done everything with my RSD did seem to calm down, but it was during the summer time and warmer weather does seem to help me too. It was a great summer, one I'll always remember because it was the year I got married.

The other question that needs to be answered but one that I can't is did the pamidronate do what it was supposed to do, which was meant to help relieve me from the deep bone pain.

Like I said I had a good reprieve that summer and sailed through my wedding and honeymoon in fairly good shape.

I would do the HBOT again if I had the opportunity.

Personally I think HBOT is worth while to see if its right for you.

Wishing you well.

MsL

Sandy...

I too have a lot of the same problems you have with have the doctors saying you don't have RSD and then many others saying I do. I actually saw Dr. Getson about 2 weeks ago. I had a Thermogram done. Have you had one of those? I was amazed at how clear cut the results were and feel now that any Dr. that says I do not have RSD is a quack. Dr. Getson, told me that my RSD in my leg is more than obvious...which I and many other doctors have seen...but many put in their reports that my leg has no evidence of RSD. Now I feel validated. I knew what was wrong with me...but I have a physical test I can walk in an office with in my hand and say..."here is my thermogram I have RSD what are we going to do about it." I was taken back a little when he told me that what I thought was a pinched nerve in my neck from the accident that flared my leg again is not a pinched nerve but new RSD...not only was I a little surprised, but very surpised that the Thermogram his office does is so intricate that he could tell that.

He was so nice and kind, I said I will probably be back to him in the future for ketamine infusion therapy, but for now to stay the course in my treatment, and possibly consider a SCS...he was right in line with my other doctors, that I have who I finally feel comfortable with. Let me know if you need any names or any help. Keep your head up!

Hi there,

Thanks so much for your reply. Getson's office finally called me 2 days ago, I have an appointment with him on Dec 3rd. His website describes his Thermographic Diagnostic Imaging. We have nothing like it to my knowledge in Rhode Island. I am really looking forward to meeting him and investigating his ketamine infusion protocol, because his office is just a mile away from one of my brothers, and an hour from my parents, and they could help my husband take care of me. His protocol sounds intense - 10 day outpatient, followed by 2 days a week for a month to six weeks, followed by 2 days a month for a year. And his office WILL work with workers comp insurance companies.

My other option for ketamine right now is NYC, where hotel rooms are going to be very expensive and which is far away from both my husband's family and mine.

So you liked him a lot? That's great. And thanks again for taking the time to write. I truly appreciate it.

XOXOX Sandy

Thanks, CZ,
I have quite a lot of fighting to do, lawyers are expensive, and court is SO STRESSFUL!
I Keep Prayin'!

Thanks

Pete