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chronic pain & more....

Posted by Rachael T. on 4/15/03 at 10:53 (116174)

I ask.....is the chronic PF pain that most of us experience on this board something that we, long time pf'rs, will suffer with thru our entire lives even though we've done all the remedies.....that it is something 'in our brain?' I read an article that stated just that.....that our brain cannot turn OFF the nerve pain sensitivity & that it may be something herewith forever.....your thoughts Doctors, & others too - please?

Re: chronic pain & more....

Bev on 4/15/03 at 12:29 (116181)

Rachael T, This is something I have been trying to find out on this board for many months also, however, never have received an answer. I have not been able to work for months due to the chronic PF pain and some think it is in 'my head' , and I am begining to wonder about it too. I am about at my witts end with this pain and others seem to think it is just a boo-boo. I have done all the treatments for over a year, ALL OF THEM, and I am still miserable. are you able to work with the pain? Are you on med for it? What are you on and what are you doing for your PF? Do you have other problems other than the PF? Thankyou in advance for your help , us PF'ers are always desperate for answers from other PF'ers. Thanks, Bev

Re: chronic pain & more....

Mar on 4/15/03 at 13:24 (116192)

I think we all wonder that, although having inflammation and edema seem to make it truly physical. I have done several things that are supposed to shut off the pain response to the brain and nothing shut off!! I think saying that 'it is in one's head' is a way of expressing frustration that we don;t know how to fix it and at least this gives us a cause for the pain. As human beings we don;t like to accept that we don;t know how to fix something and that we don;t yet know all the answers. We do like to blame ourselves also -- martyrs!! I will say that as concerns my bunion surgery and chronic pain, several doctors have told me that it is not my fault nor the fault of the surgeon. Neither of us did anything wrong. Mar

Re: chronic pain & more....

dave r on 4/15/03 at 13:28 (116194)

Does it really matter if it is in your head? You are feeling pain. I have had bad pf for 6 long years. trust me i know how you feel. There are some people here who have had long battles with this. I had to leave the job that i loved cause of my bad pf. I guess i was lucky to find another job sitting on my butt for 9 hours a day. If i had to do any walking at all i would have a real problem. If i was fired i would have an even bigger problem. I have had people tell me that the 'pain' is all in my head. Even those closest to me have told me that i seem to be making things up. It is truely unfair that your friends or spouse dont show enough support. I stopped calling them and they stopped calling me. I still struggle with the 'why cant we do this or why cant we do that' everyday. In my case most of my support came from my parents. I cant even tell you how many fights i have had with my fiance about this. But, i have learned to accept it and i have kearned to make the best of every day. I know that its very difficult especially when you have one of those bad days or bad weeks.
I have done it all to try to beat my pf. You name it and i have tried it. I will say that i have just recently had surgery and i seem to be doing very well. My pain levels have gone way down and my activity levels have gone up. I doubt if i will ever be able to run a marathon but i will say that i am able to take my dogs for a walk twice a week . I am also able to go to the store a couple times a week. Without any real pain. before i had surgery i dreaded going to the store. My ' quality of life' has gone up, that is what i was searching for all these years.

Re: chronic pain & more....

BrianG on 4/15/03 at 15:23 (116212)

I too am a long term chronic pain sufferer. I have read that researchers are trying to find out why some people percieve pain worse than others. Hopefully that answer will lead to other answers, such as why we are unable to get rid of the pain. Even my own doctor had told me that my PF 'may' have healed, but me brain is not receiving the message. When I pressed him further, he had no answers. I do hope it happens sooner, rather than later.

Don't ever give up on a cure!
BrianG, not a doc

Re: chronic pain & more....

Bev on 4/15/03 at 19:15 (116230)

So Dave, after all of those years suffering with the PF, and then having the surgery, do you wish you would have had the surgery sooner? Do you believe that this will be your cure-all for the PF ? Are you going to become our 'Poster Child' for PF success? We NEED success stories so badly to bring our moral up around here ;) Keep up the good work :D

Re: chronic pain & more....

Bev on 4/15/03 at 19:20 (116231)

Mar, Are you still doing your bio feed back and the other therapy you were doing for chronic pain? Was it, or is it helping? How are you doing? Have you been able to enjoy any of this warm weather yet? I think of you very often and wonder how you are.>:D<

Re: chronic pain & more....

Mar on 4/15/03 at 20:07 (116239)

Bev -

Well the biofeedback is on hold because the Insurance co says that the codes don;t match! I was on the phone again today trying to straighten it out. But I do it on my own at home. I still go for pain counseling and both help me tremendously to relax and live side by side with the pain without letting it destroy me. I am also going to try self-hypnosis. I go this Friday to check it out. i will stop at nothing!! ;-) All of this has been a wonderful gift that has come out of this horrible pain and life-changing experience. I am learning that i am stronger than I ever thought. Of course, i do have my weak moments, believe me!! Weather is spectacular and it's the first week that i had no doctor appointments after work and I could come home and enjoy it :-) Instead of a long walk, I sat on my porch and meditated on the beauty of nature -- healing for the soul :-)
'
Any less pain for you, Bev? Mar

Re: chronic pain & more....

dave r on 4/16/03 at 07:28 (116266)

yes, i wish that i wouldnt of waited to have surgery. I did need to wear out all of my options including eswt,twice. I am better, that is a fact. I doubt if i will ever be able to run again let alone stand on concrete for 12 hours. But i am able to enjoy myself more which is huge. i am hopeful that i will be able to do more and more everyday.

Re: chronic pain & more....

Tom C on 4/16/03 at 09:08 (116275)

It sound so familial......'Come on Tom aren't you milking this heel thing a little'.

NO!

We have one of those invisible injuries that people just don't relate to.
If we had a cast or bandage or other physical sign of injury, then people seem to relate. Our limps and hobbling are perceived as little acts for attention.

We can really say 'Please try walking in our shoes for a mile....nah just try a hundred yards!'.

I did have a pleasant surprise Sunday...... I was on my feet most of Sat and the heels were killing me, I took my meds and poped a FEW Advil which i am forbidden to take, and low and behold Sunday I had one of the best days that Iv'e had in months and months.

there is light at the end of the tunnel but darn it's a long dark tunnell. :<)

Tom C

Re: chronic pain & more....

Kathy G on 4/16/03 at 09:25 (116282)

That it is, Tom. I keep reminding myself, when my feet hurt a great deal, that they recover much quicker than they used to. It's all relative, I guess.

Re: chronic pain & more....

Rachael T. on 4/16/03 at 13:31 (116311)

In answer to one of your questions that Bev asked....yes & no -- Am I able to work? Well, for the past 28 years, I have been a professional horse trainer & competitor & I have always kept approximately 20 horses in stalls in full time training & traveling to shows in 3 states. PF onset was 4/2001 & I continued to train taping - wrapping - ice-pain meds-1-ESWT-umpteen prescribed orth.+2-P.T. & such......& it was never easy. The first winter w/ PF I took some downtime - leaving work for my assistant. Then, the summer came & I tried again to do it all. Needless to say, when the winter - NO, The Fall - when the fall came, I 'downtimed' it again with hopes of healing more. Now, it is spring & in the last 2 months, I've advised my long time clients that I was downsizing to 7-8 head & all of those are either brood stock or horses that are mature in their training - thus, they need less work daily. Sooo - in essence, I am still 'trying to work' - but my business is not & won't be like it was for the past 20+ years....but I've now relented & said - OK, I shall consider myself as partially retired & only work some of the time in the barn & travel less.....the rest of the time, I shall work for myself at healing my feet. Fortunately, my husband of 30+ years is very supportive & understanding - & I never complain now about his golf time! I am smiling as I write that! At this time, I await an adjustment on my latest orthotics from the PT guy - the 'tempo' pair are on my feet & have been for some time & they seem to make the correction in my ankle movement, but they're not comfy - the new ones 'Footmax' needed to have my heel cup deepened....I am hopeful that this will 'spur' me onward! I've also advised myself that everything happens for a reason--maybe it was time for me to 'slow down.' If that is the case, I have! smiling lots on that one!

Re: chronic pain & more....

Rosemary on 4/17/03 at 07:08 (116390)

I agree with Mar. I think the secret to overcoming this is to bombard it with various modalities, if you can afford the expense. when I think of what I do in a given weak to manage the pain I am amazed that I can fit in anything else. Every day I do something that is related to this thing (post ESWT) Two times a week massage, two times a week chiropractor, up until two weeks ago two times/wk PT and one time/wk acupuncture (haven't done recently and my back is worse - acupuncture is fabulous for the back pain), warm baths twice a day. All the time I used to spend exercising is going into this. Also received first pair of SDO's. I meditated, gone to Raiki healers and have also done hypnosis. When a war is on you bring out all the troops. By doing all these things simultaneoulsly, my body feels relief for longer and consecutive periods, which I am hoping my body and brain responds to and allows me to get out of the 'pain mode' There may not be any scientific proof to this, but I think my body has gotten accustomed to the pain. If I can get it accustomed to the relief, maybe that will become its normal state of functioning. Hope this helps!

Re: chronic pain & more....

Bev on 4/17/03 at 07:18 (116392)

Rosemary, What are you doing now for your pain? Excuse me for asking again,( Neurontin moment,) is your's PF or TTS ? What meds do you take? Thanks, Bev

Re: chronic pain & more....

Faye R. on 4/17/03 at 12:05 (116411)

So, I think I have an answer to my question, after reading all your comments. The pain I have had in my feet for several years has just recently been diagnosed as PF (my doctor said, with a supercilious look on her face) and I just plain have to live with it, it seems. Depression has kind of gotten to me lately because of this (or maybe it's the unrelenting NW rain)because nothing I love to do and have to do can be done sitting down. O.K., o.k., I'll lose the surplus 35 pounds I'm carrying around - maybe then I'll be cured (wait a minute - I had this pain BEFORE I gained the 35 pounds!)Guess I'll just see how much my insurance is willing to cover of all these treatments you guys have talked about.

Re: chronic pain & more....

SteveG on 4/17/03 at 13:15 (116423)

Where do you live, Faye, in Seattle?