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greetings from the PF problem child...

Posted by cindyp on 3/16/03 at 22:23 (113176)

i never cease to be amazed at the wonderful inputs by everyone with PF and related disorders. i take notes as i read the most recent ones. i want to share with you my current treatment regimen, and explain more about Neurontin (that's the brand name, the generic one is gabapentin. for some reason i like that name better, so i'll refer to it as gaba). gaba is, as most of you know, FDA-approved for seizure disorders. but that doesn't mean docs can't use it for other conditions, if the studies are there to back it up. a neurologist (ironically, dr pain, although not spelled that way exactly) explained to me that i needed to start on 300 mg a day, at bedtime, then gradually increase it by one 300-mg pill every 3 or 4 days. he told me the side-effects would eventually go away. he cautioned me that i might have to take between 6 and 12 pills (!!!) before i felt any relief. thankfully, i am up to 4 pills a day and now it seems to be helping. oh, and it takes two weeks to take effect. when i go off of it, and who knows when that'll be, i'll have to kindof do it in reverse order; stopping it suddenly apparently is not good for the body. my worst side-effect was nausea. thankfully, that is gone. other side effects (and i'm referring to my pharmacy handout) are 'drowsiness, dizziness, unsteadiness, fatigue'. then there are the scarier effects: 'unlikely to occur but report promptly: mental or mood changes, tingling or numbness of the hands or feet, swelling of ankles, vision problems, fever, unusual bleeding. very unlikely to occure but report promptly: fainting (as soon as you come around, i guess), difficulty moving, stiffness, uncontrolled movements, stomach or abdominal pain, leg pain, chest pain, trouble breathing.' also, don't take gaba with antacids; they can interfere with its absorption. allow 2 hours in between.
to liz: i was offered Elavil but decided on the gaba; i've never heard of Vivactil. thanks for the heads up; let us know how it's working for you.
to bev n: thanks for your post! idon't believe gaba (Neurontin) is known for weight gain, but ask your pharmacist. i am not personally worried about weight gain! i ache in muscles i didn't even know i had, between crawling and scooting and using my arms to move my wheelchair. i burn off a lot of calories just getting around my house. and tomorrow i'm beginning a gentle yoga tape. i sense a different kind of nursing in my future; i don't think i am returning to the o.r. i'll keep you posted. tomorrow i'll see my employer's occupational med m.d. if he's the guy i saw when i was hired i'll be okay. what i need is for him to say yes, it's work-related, so i can stay home and rest and be gorked for a couple more weeks before i go to some desk job. think of me tomorrow morning . oh, i start physical therapy this friday. how's the iontophoresis-cortisone working for you? please let me know. thanks.
to pam s: i'm glad you only need 400 mg of gaba. keep driving safely. i have two teen daughters and understand the taxi thing.
to kathy g: what a beautiful message! i love my wheelchair, which we've named Lazy Beulah. i can load/unload my dishwasher, do laundry, etc. sure, my girls can do it, but i like to too; i like to 'nurture' my house. next week Beulah and i will vacuum. should be interesting. a bit of caution about vitamin E: it's fat-soluble, which means the body actually stores it in the liver (as are vits. A,D, and K). i wouldn't do more than 800 mg per day AT THE MOST. you should check with your doc. other vitamins, B and C, are water-soluble, the body doesn't store them. too much B can cause numbness in extremities; too much C will cause diarrhea. i'm not an expert (this is my disclaimer, i'm just a patient like the rest of you), so consult current literature and again, check with your doc. (i know nothing about fish oil except that i can't stand it because i don't like fish. wish i did.)
pam b: maybe it's time for you to start coming off of gaba (Neurontin). if it's helping your pain, then check with your doc. you're on really high doses. be careful driving!)
josh s: good question about podiatry research. i'm going to ask mine next time i see him, when my orthotics come in, hopefully this week (yay). i'll let you know.
okay everyone, i've got to do some research before i see the O.M, doctor tomorrow; i have no idea what he'll know about PF and i'm assuming not much. for all of you out there: what kind of time frame am i dealing with here? i'm on the gaba, Vioxx 50 mg a day for the inflammation, and oxycontin. the only reason i'm on that is because i'm weaning off of it from my cervical spine surgery and my doc (who's great) doesn't want me to cold-turkey withdraw from it, especially now. i don't recommend getting on it if you can help it.if you think gaba gorks you, believe me the oxy is worse. but i think that for me, this triad of drugs is working. my pain level is now a 5-to-8, depending on my activity. i'm learning about the '24-hour effect'. my guy ray says i may spend at least a month in the wheelchair. so how long am i looking at? feedback would be greatly appreciated. many thanks -- cindy p.

Re: greetings from the PF problem child...

Bev N on 3/16/03 at 23:33 (113177)

Hi Cindyp-problem child: I have been looking for a gentle yoga tape too with no luck. All the tapes I see, have you up on your feet. Maybe you could pass on the name and e-mail of your tape. I do not get out shopping much to look either, and had no luck on internet finding one either. Your PF sounds really serious too. What do you think you will do when you do go back to work? Will they have a desk job for you?
This is my second go at PT. First time did not help, but I was still working at that time, and that is probably why. I have had 5 ionto Tx. so far and so far no improvement, still a lot of pain in heels, arch, and balls of feet. I really need a w/c too or a scooter. I will need to call dr. to see if he will write me an Rx for one so ins. will pay for the rental.I use the motorized carts at Walmart, and that is the only place I shop.I sure would like to know how to vaccum in a w/c , sounds like quite a challange to me. My hubby does that part of the housework.But I am like you, I love to nurture my home too.
Keep us posted as how your meeting goes at work, wish you the best of luck. Are you able to drive yourself? Do you take your w/c in car with you to use places? Have a good day, and hope to 'talk' to you again soon. Bev

Re: greetings from the PF problem child...

Pam S. on 3/16/03 at 23:44 (113178)

Gals it is late where I am so I will write more tomorrow but I think you could totally benefit from Yoga. I cannot stand on a hard floor barefoot either. They will sometimes let you wear a soft shoe but call first. I also went out to a SportsAuthority and bought a really soft cushion type exercise mat I plan to take to yoga class. I think all the stretches are wonderful for you and the relaxation is too. Just call ahead and ask it it a gentle class and could you bring all you feet helpers. Sometimes when I think of all the time I spend thinking about my feet I laugh (that is on a good day. HAAAAAA Take care

Re: greetings from the PF problem child...

Pam S. on 3/16/03 at 23:48 (113180)

Oh, I re-read your message. Maybe you cannot get to a class. I will ask about tapes for you that are safe. You just need to be careful not to injure yourself. I am sorry your case sounds so difficult.

Re: greetings from the PF problem child...

Bev N on 3/16/03 at 23:58 (113182)

Has anyone found a pilates tape we could use that does not require us to use our feet? Even a yoga tape would be great to find to use at home that does not require the use of our painfull PF feet. I hope you all out there can sleep tonight, I can't so far.My sister is very ill and I worry and can't sleep. Night all.

Re: greetings from the PF problem child...

Suzanne D on 3/17/03 at 06:34 (113184)

Hi, Cindy! I just wanted to say that I admire your positive approach as you named your wheelchair and look for all the things you CAN do! That is a great attitude and will be of invaluable help to you.

I am a first grade teacher, recovering from PF, slowly but surely. In June it will be two years since the onset. I have learned so much from this site and been encouraged by many fine people. That is why I still like to come and read and post.

My best wishes to you, Cindy, and I hope your orthotics come in this week. I've got to leave for school now, but I just wanted to say hello to you.

Suzanne :-)

Re: greetings from the PF problem child...

Rose M. on 3/17/03 at 10:34 (113196)

I found a chair yoga tape at my local library. If you have a good public library near by, they usually have a good section of fitness tapes, books etc.

Re: greetings from the PF problem child...

monte on 3/17/03 at 10:44 (113197)

look into windsor pilates tapes....no standing required....i bought them


Re: greetings from the PF problem child...

Bev N on 3/17/03 at 12:43 (113207)

Monte, Do you like those tapes? I was looking at the sight, and there is a set of 4 tapes, right? They do not require us to be up on our feet? Do you like the tapes? Are they worth buying? Thankyou, Bev

Re: greetings from the PF problem child...

monte on 3/17/03 at 13:58 (113213)


they are good tapes. stat with the beginners and the abs one. i like them and i was a die hard weight lifter at one time and a martial artist.

good luck. monte

Re: greetings from the PF problem child...

Bev N on 3/17/03 at 19:35 (113252)

Thanks monte, I did order them. Bev

Re: greetings from the PF problem child...

Rose M. on 3/19/03 at 13:53 (113490)

There is also a whole series of tapes called Chair Aerobics. These are excellent if you want an aerobic and muscle workout. I have them and they are great. There is one on just muscle work and one on just yoga and several on aerobics with different types of music. All are done in a chair and are very fun.

Re: Good Pilates tape

Cyndi T. on 3/20/03 at 23:01 (113700)

Denise Austin has a good pilates tape. It is all mat work, with some yoga included. I purchased mine at Borders. There is a website listed on the back, http://www.artisanent.com .