Dear Rrrrrr/Frogga -

Although I can't respond to even half of the questions you raise, I did want to write, where there is just so much expressive clarity I’m your writing and we share the affliction of debilitating cramping.

I really just have two suggestions for things to be raised with your doctor before going under the knife. First of all, you have seen Debbie's thread - among others on Pycnogenol, the antioxidant made from French maritime pine bark. It's been pointed out to me that the active ingredient is the same thing as grape seed oil, which is available at a fraction of the cost. Please check out the first of seven pages from PubMed on the stuff. It's pretty amazing: http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=pubmed

In that regard, please look particularly at "Glutathione: Systemic Protectant Against Oxidative and Free Radical Damage" Alt Med Rev 1997; 2(3): 155-176 [sorry, for some reason I can't upload this as an .html file, and it's too large by almost a factor of 10 to attach as a Word file; if anyone wants it, just send me a p.m. with your email address and I'll try to get it out that way] and then this abstract:

"Diabetic ulcers: microcirculatory improvement and faster healing with pycnogenol," Belcaro G, Cesarone MR, Errichi BM, Ledda A, Di Renzo A, Stuard S, Dugall M, Pellegrini L, Gizzi G, Rohdewald P, Ippolito E, Ricci A, Cacchio M, Cipollone G, Ruffini I, Fano F, Hosoi M.; Clin Appl Thromb Hemost. 2006 Jul;12(3):318-23.

Diabetic microangiopathy leads to lower limb ulcers that are very slow to heal. Pycnogenol was evaluated on diabetic ulcers in a controlled trial. Ulcer medications were used in 4 groups (30 patients): (1) systemic Pycnogenol and local application; (2) local Pycnogenol only; (3) oral Pycnogenol; and (4) medications only (control group). Ulcerated areas and symptom scores were more reduced with the combined oral and local treatment (P < .05). Oral and local treatment were less effective, but still improved compared with the controls. Combined treatment produced 89% complete healing at 6 weeks versus 84% with local treatment and 85% with oral treatment; healing in controls was 61%. The combined treatment group and oral only group had better microcirculation after the combined treatment. Combined local and systemic application of Pycnogenol may offer a new treatment of diabetic ulcers. Local treatment also speeds ulcer healing.

and then this one:

"Cramps and muscular pain: prevention with pycnogenol in normal subjects, venous patients, athletes, claudicants and in diabetic microangiopathy," Vinciguerra G, Belcaro G, Cesarone MR, Rohdewald P, Stuard S, Ricci A, Di Renzo A, Hosoi M, Dugall M, Ledda A, Cacchio M, Acerbi G, Fano F.; Angiology. 2006 May-Jun;57(3):331-9.

The aim of this study was to assess the preventive action of Pycnogenol (Horphag Research Ltd, UK) on cramps and muscular pain in different groups of subjects and patients. The study included a 5-week observation period (4 weeks treatment and one follow-up week after the suspension of treatment) to evaluate the efficacy of Pycnogenol after its withdrawal. Four 50 mg capsules (total dose 200 mg/day) were prescribed with suggestion to drink at least 1.5 liters of water every day. In the first part of the study 66 healthy subjects completed a 5-week follow-up period. The difference between number of cramps attacks recorded within the 2 weeks before inclusion and the number of episodes during the fourth (p <0.05) and fifth (p <0.05) week were statistically significant. In normal subjects the average number of episodes was reduced from 4.8 (1.2) events per week to 1.3 (1.1) at 4 weeks (p <0.05). In venous patients the decrease in events was from 6.3 (1.1) to 2.6 (0.4) per week (p <0.05). In athletes the number of episodes decreased from 8.6 (2) to 2.4 (0.5) (p <0.05). The decrease was still present at 5 weeks in the 3 groups, to levels significantly lower than inclusion values (p <0.05). In the second part of the study, patients with intermittent claudication and diabetic microangiopathy were evaluated and treated (4 weeks). The groups treated with Pycnogenol and the control, placebo groups were comparable. There was a significant decrease in the number of cramps episodes (p <0.05) and in the score concerning muscular pain (p <0.05) in claudicants and diabetics. No significant effects were observed in the placebo groups. In conclusion, cramps and muscular pain, common in these 2 types of patients, were decreased by the use of Pycnogenol. Globally, these results suggest that the use of Pycnogenol prevents cramps, muscular pain at rest, and pain after/during exercise in normals, in athletes prone to cramps, in patients with venous disease, in claudicants, and in diabetics with microangiopathy. The difference is statistically significant considering objective observations (cramps episodes) and evaluating more subjective aspects (score). This indicates that Pycnogenol is effective in reducing pain and cramps during retraining and rehabilitation increasing its efficiency. In starting any physical rehabilitation program, particularly in vascular subjects, the limitation in mobility associated with muscular pain and with cramps tends to be relevant, and controlling these symptoms is useful to speed up the retraining process.

But for the fact that I am trying get some base-line Interleukin 6 testing done within the next few weeks - testing that I've spent over a year trying to get in place - I would be on the stuff already. Where you have significant issues with both cramping and ulceration, I would try and get on this with a rather aggressive dosage as soon as possible, certainly well before you have leads placed in your brain. (And in that regard, while I never received the apparently lower tech spinal cord stimulator, it's my understanding from reading the board over the years that a substantial majority of people become dissatisfied with their stimulators within 2-3 years: part of the reason why I never pursued the treatment myself. For more information - and if you haven't done so already - take a look at the articles under the section entitled "Treatment" on the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html.) And speaking of IL6, it's also my understanding that emerging classes of anti-IL6 meds have as their principle side effect opportunistic infections, including but not limited to meningitis. I.E. these meds and direct brain stimulation definitely do not mix.

Secondly, there is I believe some work going on right now looking at the role of opioid analgesics in promoting an intestinal bloom in the small intestine. Now, people have known for years that opioids can cause all manner of GI problems, what's new here is that I am told that there is direct evidence linking the aforesaid bloom with the production of neurotoxins. What I know is that after gas spectronomy indicated an elevated level of hydrogen in my gut, I was given a fairly high end antibiotic over a ten day period, which put the cramping into complete remission for about a week. Unfortunately, subsequent applications have not been as successful as the initial results, the second was not as good as the first, and the third not as good as the second, etc. But that said, it's something that while firmly experimental, may be worth bringing up with your physicians. And no, I'm not aware of anything having been published on this one as of yet; from what I understand it's still in the grant writing stage. I guess what this means in practice is that if there's a way to avoid the use of narcotics for pain control, it is most certainly worth your serious attention. But then you knew that already.

That's about what I know. Best of luck in sorting this all out. It would be fabulous if you got the promised relief. Truly.

Mike