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An update -- and some hope

Posted by Robin B. on 2/07/00 at 00:00 (015578)

I have been on this board forever. At least it feels that way. In truth, it has only been about 16 months. I have had PF for nearly 2 years, and I know that many here have more years than that with the monster.

I'm happy to report that I am now able to walk 3 miles and sometimes 4 miles a day -- in snatches. I do 2 in the morning, and 1 or 2 in the evening. Or sometimes just 2 and call it quits for the day. After 22 months of sitting on my butt for between 20 and 22 hours each day -- it's heaven. I started walking again in December, 1/2 mile at a time, and very gradually built up to 1 mile at a time, then a little more and so on. I remain fastidious about icing, appropriate shoes, etc.

For anyone who needs hope and inspiration, I hope this is it. I was one of those PF cases who was in 24 hour a day pain. The ONLY time my feet didn't hurt and ache and throb was when I was asleep. Otherwise, it was pain -- sitting, standing, lying down -- all the same to me. For a long time, I honestly didn't know how I was going to make it from one month to another, that's how severe and chronic the pain was. I spent many nights crying. I also very seriously considered going onto NSAIDs permanently. I didn't particularly care if they ripped my gut apart and sent me to the hospital in shock; what was important was having SOME quality of life, even if for just a few years. At the time, it made perfect sense to me, another illustration of how bad the pain was.

There IS hope. For everyone, regardless of how long you have had PF or what your circumstances are, there is hope. I know, for certain, two things: 1) You absolutely must keep on trying. If A,B,C and D don't work, try E,F and G. Even if you get down to double-Z's, keep trying. And please (I say this so often I know people get tired of hearing it) -- give whatever treatments you are trying long enough to work. A week or two generally isn't long enough to work. People who rattle off 7 things they have tried in 9 weeks aren't giving treatments long enough. Depending on the approach you try, it may take 3, 4 or more weeks to be able to make any determination about effectiveness. (I stayed on glucosamine sulfate for more than 6 months before I determined that it wasn't helping me enough to warrant continuation.)

Here's No. 2. Everyone IS different. Different things work for different people. Sometimes people get on this board and get a little fanatical about this one approach or that -- and I too am tempted, being a big Birkenstock fan. But whether it's Birks or leaky gut or taping or physical therapy or surgery or acupuncture or massage, it's really critical to find exactly the combination of treatment modalities that work for you.

I myself first found Birks. They got me about 30%. Then seven months later I started serious doses of bromelain. That bought me about another 30%. I have been on a modified low carb diet seemingly forever, but in the fall I eliminated all wheat and flour products and that seemed to get me another 20%. In between, I tried LOTS of stuff that didn't work (including a couple of docs).

Everyone on this board is here because he or she is a resistant case of PF. It's a killer of a condition -- but truly, there IS hope. Day after day, nothing is harder than to keep your chin up and your spirits high and your attention focused on trying to beat this crud. But it CAN and WILL happen. It's a matter of finding the right combination that works just for YOU and possibly for you alone. I remember thinking that nothing would ever work for me, that I would never ever be able to walk even 1/2 mile again. Lo and behold, the right combination finally kicked in. (I swear, I'll wear Birks into my 90's, I'll have to buy stock in the Vitamin Shoppe and I'll probably have no more than one piece of bread a month. Small price to pay, to my mind.) I wish that same kind of good fortune to every person here.


Re: An update -- and some hope

Laurie R on 2/07/00 at 00:00 (015579)

Hi Robin This is so nice to hear!!!!!!!And you are so right you do need to find what works for you ,as for me I am still looking but it is ok I feel better this week then I did last week the pain is the same but I feel better about myself.I will not let doctors get me down anymore.That I do have control over.It is so good to hear you can walk again see their is hope for each of us it just takes time.Have a good night Robin.Laurie R

Re: An update -- and some hope

Laurie R on 2/07/00 at 00:00 (015579)

Hi Robin This is so nice to hear!!!!!!!And you are so right you do need to find what works for you ,as for me I am still looking but it is ok I feel better this week then I did last week the pain is the same but I feel better about myself.I will not let doctors get me down anymore.That I do have control over.It is so good to hear you can walk again see their is hope for each of us it just takes time.Have a good night Robin.Laurie R