PT, Pain management and Pleasure?

[Guest guest]

Hi all,

There were a few messages today that have really piqued my interest!

Thanks to those of you who tried to address my questions re: pain meds.

I am still hearing mixed reports. Some of you say they have not interferred with your progress on LDN and some of you post that it will. I believe Dr. B's site instructs the patient to stay away from opioids and alcohol (something I rarely partake of anyway) but I don't see any info for what to do on those really bad days "when I hurt so much I want to cry" (as Reg so poetically put it).

And I must remember that my primary dx is not MS (so far) so my response to the naltrexone may differ greatly in the long run because what I am trying to accomplish with it is different from the rest of you. I want to get my viral load down near zero so the HepC goes inactive. I would also like my chronic "neuralgia" to go away- but that will just be an added bonus if the LDN can do that! For now I am going to stick to what works. If I have a really bad day I will resort to what helps- if you let pain build for too long you cannot break the cycle and it only gets that much harder to get on top of it. And this tidbit to Reg: I now understand why they prescribe medical MJ to terminal cancer patients- it really can help the pain (not saying I advocate or partake ;-) just concurring with your opinion for now!)...

: Your info and questions about PT are much appreciated.

I will be commencing my PT in the next few weeks. While my true Dx for my pain, spasms and twitches is still out with the jury, I was cautioned by my rheum. doc to stay away from any serious exercise until I completed a course of Physical Therapy. Her reasoning: When muscles have atrophied or there is chronic pain and stiffness, aerobic exercise or load-bearing exercises increase the chances of causing an injury to the patient. So she ordered me to start out low and slow so I don't tear a hamstring or something godawful. I used to be a hiker, diver, swimmer, getupNgo kinda gal. I did Pilates and yoga regularly. But my Get Up and Go, Got Up and Went (sorry for the cliche). I'm not sure which is worse most days: The Pain or the Mind-Numbing Fatigue.

So doc had me start with just some short walks, more of a casual stroll, and simple stretches, as well as regular soaks in a warm bath (can't complain about that order!). The therapist has an Rx to do Deconditioning on me. In other words, they are going to retrain ME how to respond to my body, rather than rebuild my muscles and flexibility. Instead of overdoing it on my good days and then paying for it with a run of really bad days, I should learn how to ease myself back into moderate activity and exercise and the re-building of my muscles and strength will naturally follow. Make sense?

Yeah right, and I have two young children to chase around, as if that weren't exercise enough? :-)

So yes, you can expect some setbacks when you start PT, especially if your practitioner is not very knowledgeable about cyclic pain and spasticity. I will be going to a facility that specializes in Fibromyalgia and MS. I'll keep you posted on how it goes. You may find you need to get a different therapist and try the Deconditioning as well?

Next topic: Someone asked how to go about privately setting up a research fund? Its quite easy if you have a trustworthy person to put in charge. Set up a webpage outlining your goals- to collect money to fund research for the use of LDN in treating MS and other autoimmune diseases. Have a research physician signed on -or contact Dr. Bihari for info. You might be able to find Med students, Interns or others that would be interested in helping conduct a clinical trial if they can publish the results as part of their graduation requirements.Then attach a link to Paypal on the site and send out emails (not spam) to folks you know would donate. They can do it securely on-line. Put links on other's webpages if they will allow it. As you gather donations, leave the funds in the Paypal account and post a status message periodically that will allow others to see that the money is being held legitimately. You would not want to be accused of internet fraud or theft by deception (my brother is a cop). Once you hit your $$ figure you then turn the funds over to the research facility, collect the results of the clinical trials and then smuggly present these results (hopefully published in a respectable medical journal) to the National MS Society! It might take many months or even a couple of years, but if you can get valid research and plop it in front of the NMSS and make them sit up and take notice it will be worth the wait.

And finally to Friday:

You get the Golden Giggle award this week for your post that I had to copy again below!

One of the first things to go when you have an endocrine disorder is the old Libido. I had never had any problems with lack of desire in my life so I was really disheartened (and so was my DH!) at first. I am so glad that getting my thryoid hormones rebalanced is helping me out in that department, so is a bit of extra progesterone. But if LDN can do for me what you described below then hellsbells, girlfriend- Sign me up this instant!! What's your dosage again?

Smiles,

Lara

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Message: 6 Date: Sat, 15 May 2004 15:41:07 -0000 From: "Friday" <paraschick@...>Subject: LDN - The GLorious Endorphin regulatorHi Everyone,In my search for how LDN helps endorphins, I found this statement:"Endorphins regulate feelings of pain and hunger and are connected to the production of sex hormones". Wow!!Totally explains why I didn't care that I had just bashed my foot against the fridge door, due to my severe cravings for food, and once I ate, felt incredibly horny and attacked my husband when I returned to bed. "