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Losing hope ......

Posted by Laurie R on 6/15/00 at 15:01 (021868)

Hi to all,
No this is not a pity party I had one yesterday by my self,I have been out of my hard cast for 2 weeks now and I am worse than I was before my last cast.I was feeling so good in the cast I had pain but nothing like now. My foot is so inflammed I have a big lump of scar tissue on my fascia that my therapist is trying so hard to make it go away.I go to therapy 2 times a week now.I am still in my walking cast and I see my Pod next week.I almost called him yesterday so I could of got a shot just to numb my foot but I was to depressed to even go .

The good thing is I am getting my muscles back in my leg (I lost them all due to being in a cast for so long ).

I do have a little bit of hope left but not much at this point. In two days makes one year for me having PF and I still have it.The first doctor I saw told me it would be all gone in 4 weeks max,wrong.

Ok Thank you for letting me vent and thank you to ALL on the board you all are wonderful .......Laurie R


Re: Losing hope ......

Cheryl on 6/15/00 at 17:31 (021880)

Keep your chin up kid! things change...

Re: Losing hope ......

Beverly on 6/15/00 at 21:27 (021893)

Laurie,

I have read your story over the last few months, and I often think about how hard it must be to wear that cast, and now to find your foot hurts more than ever has got to feel devistating.

My hope for you is that you don't lose hope. Hope is a very powerful tool. I have been around AIDS and cancer survivors a good bit. One thing that separated the people who found a way to live a modified but happy/functional version of their past life vs. those who didn't, I truely believe was and is hope.

I know this is a totally different illness and thank God PF is not fatal, but I am pointing out these two other illnesses, because I draw strength from friends who have them. I remember in the days before protease inhibitors, AIDS was a far more cruel disease than it is today.

Through my work, I met a few guys who lived to see those new drugs developed, and I really believe what kept them alive and relatively happy despite their horrible plight was hope and faith. They really believed that the cure was just around the corner... that all they had to do was hang in there a little longer.

And in our own world of PF, everytime I read about someone who had a horrible case and had it for a long, long time, and is now healed or mostly healed, I draw hope from their stories.

But like you, I do have those down days, and I have not suffered nearly as much as you have. I feel for you. A cast has to be miserable to wear and even worse if it did not work.

I hope you have a better day soon,
Beverly


Re: Losing hope ......

wendyn on 6/15/00 at 22:28 (021897)

Laurie I'm so sorry to hear that you're not doing better. Just so I can remember right - you've seen the podiatrist you like and a neurologist that you hated. Have you seen an orthepedic surgeon? I know how much you like your doctor, but maybe it really is time to get another opinion.

I know you had nerve conduction tests, did they ever do a bone scan or MRI? What about the blood work for things like B12?

You're doctor also suggested Elavil, neurotonin and/or acupuncture didn't he? Have you tried any of those yet - or are you considering any of them?

Sorry for all the questions, I'm just concerned and wondering where you're at with all this.

Keep in touch

Wendyn


Re: Losing hope ......

Laurie R on 6/15/00 at 22:53 (021899)

Thanks to all,
So far I have had 6 different doctors, Yesterday and today have just been the pits I think everything just has hit me this week makes 1 year since all this has started.My Podiatist sent me to a Neurologist for a second opinion and the EMG test a few months back and the Neurologist is the one who diagnosed me with TTS ,yes Wendy I did not care for the Neurologist at all. Than my Podiatrist sent me to a pain specialist for other opinion all doctors said what my Pod is doing is text book and they all agree with him.

Here's the thing I know I must be doing something wrong I get in a cast (hard ) and after 1 week I start doing really well and the pain goes down than I come out of the cast and start walking using my foot more and more and the pain starts to come back. See this time when the cast came off (9 weeks ) I had the BIG lump of scar tissue and I knew this is going to cause a problem and it has.

I was going to go to acupuncture but the day I got the cast off I was feeling pretty good so my Pod said do you want to wait and go at other time because it might aggravate your foot and nerve,I said yes I will wait. I chose to go back to PT to re build my muscle in my leg since I lost it all.My muscles are coming back so I am happy about that.

Sometimes I just get so frustrated and other times I do just fine even with the pain. I know I could be worse off like Beverly had said there are worse things besides PF and TTS ,so I am very thankful for that.

Thanks to all for letting me vent sometimes it just makes me feel better that I can sit here and write to people that understand and that care......I love this board and most of all the support.....

Laurie R PS Tomarrow is a new day and it will be better than today ....


Re: Losing hope ......I lost hope a long time ago

DaNita on 6/15/00 at 23:41 (021901)

I have been fighting my pf for going on 5yrs. I have had 3 surgries on my left foot and one on my right. The surgeries were unsucessful! This has totally changed my life as I once knew it. I have also been diagnoised with Fibromyalgia. I was told that some of the stiffness in my feet is from that. I have been to no less than 7 doctors, they all say they cannot do anything for me that I will have to learn to live with the pain.( before surgery, they said they could fix me right up, WRONG! I have only gotten worse.) I have lost all hope that my feet will ever get better.
thanks for listening.

Re: Losing hope ......I lost hope a long time ago

Nancy S. on 6/16/00 at 05:33 (021905)

DaNita, you sound like you've been through a whole lot. I'm sorry you've lost hope -- I hope you can get it back. How are you coping with the pain, and does anything at all work for you in fighting the limitations caused by this? (I know you've been on the board before -- I've seen some of your posts when I've done searches on topics.) Would you be a candidate for EWST? --Nancy S.

Re: Losing hope ......

Rick R on 6/16/00 at 06:46 (021906)

Sorry to hear you are still struggling to find the path to relief. If I know you Laurie, after a few moments of being down and a little support, your fighting spirit will be back. Take sloace in knowing some of us have managed to beat this or at least get control. Keep on fighting!!

What a hoot on the 4 week cure. They gave me three weeks, missed it by a decade and a half!! Worse yet the second and third doctors that knew I had been at this for many months, still went woth the silly three week prognosis.

Rick



Re: Losing hope ......I lost hope a long time ago

Laurie R on 6/16/00 at 11:29 (021917)

Hi deNita,Rick and Nancy,
To DeNita first of all I am so so sorry I am here running my mouth about all my pain and you have have had this for 5 years my heart goes out to you.What do you take for pain??? 7 doctors ? I have had 6 so far for this.My Pod told me NOT to let anyone cut my foot and he is a foot and ankle surgeon,he said it could make things worse even tho I am in all this pain right now I don't want surgery at this point.I have PF and TTS.my very best to you DeNita....

Rick, Thank you so much for your reply,I am feeling better today and the pain is not so bad (not yet) but I just got up.How are you doing??? You have always such a nice and caring person.PLEASE post us and tell us how you are doing......

Nancy,
I know you were posting to DeNita but I still had to reply to you.Thank you for all your support to us all even though you have all your own pain going on ,thank you for thinking about us......

Today will be a better day !!!!! I will not let the pain take over me today...My very best to all.Laurie R


Re: Losing hope ......

dks on 6/16/00 at 13:23 (021922)

I had a cast on for PF it didn't work either! I understand how frustrated you feel! It is just a never ending battle with my foot and the pain. Hang in there Laurie.

Re: Losing hope ......I lost hope a long time ago

Nancy S. on 6/16/00 at 14:37 (021931)

Hi Laurie, from the sound of it, I still think today that you should enter your wad of scar tissue in the Guinness Book of World Records -- BEFORE your PT breaks it up and gets rid of it for you and you have no claim to fame. Good luck to everyone --Nancy

Re: Losing hope ......

UK Mark on 6/17/00 at 10:01 (021956)

Stay with it kid. You're having a bad day, dont think about it too much, You will have better days. Dont give up hope, things will be better than this!

Re: Losing hope ......

Cheryl on 6/15/00 at 17:31 (021880)

Keep your chin up kid! things change...

Re: Losing hope ......

Beverly on 6/15/00 at 21:27 (021893)

Laurie,

I have read your story over the last few months, and I often think about how hard it must be to wear that cast, and now to find your foot hurts more than ever has got to feel devistating.

My hope for you is that you don't lose hope. Hope is a very powerful tool. I have been around AIDS and cancer survivors a good bit. One thing that separated the people who found a way to live a modified but happy/functional version of their past life vs. those who didn't, I truely believe was and is hope.

I know this is a totally different illness and thank God PF is not fatal, but I am pointing out these two other illnesses, because I draw strength from friends who have them. I remember in the days before protease inhibitors, AIDS was a far more cruel disease than it is today.

Through my work, I met a few guys who lived to see those new drugs developed, and I really believe what kept them alive and relatively happy despite their horrible plight was hope and faith. They really believed that the cure was just around the corner... that all they had to do was hang in there a little longer.

And in our own world of PF, everytime I read about someone who had a horrible case and had it for a long, long time, and is now healed or mostly healed, I draw hope from their stories.

But like you, I do have those down days, and I have not suffered nearly as much as you have. I feel for you. A cast has to be miserable to wear and even worse if it did not work.

I hope you have a better day soon,
Beverly


Re: Losing hope ......

wendyn on 6/15/00 at 22:28 (021897)

Laurie I'm so sorry to hear that you're not doing better. Just so I can remember right - you've seen the podiatrist you like and a neurologist that you hated. Have you seen an orthepedic surgeon? I know how much you like your doctor, but maybe it really is time to get another opinion.

I know you had nerve conduction tests, did they ever do a bone scan or MRI? What about the blood work for things like B12?

You're doctor also suggested Elavil, neurotonin and/or acupuncture didn't he? Have you tried any of those yet - or are you considering any of them?

Sorry for all the questions, I'm just concerned and wondering where you're at with all this.

Keep in touch

Wendyn


Re: Losing hope ......

Laurie R on 6/15/00 at 22:53 (021899)

Thanks to all,
So far I have had 6 different doctors, Yesterday and today have just been the pits I think everything just has hit me this week makes 1 year since all this has started.My Podiatist sent me to a Neurologist for a second opinion and the EMG test a few months back and the Neurologist is the one who diagnosed me with TTS ,yes Wendy I did not care for the Neurologist at all. Than my Podiatrist sent me to a pain specialist for other opinion all doctors said what my Pod is doing is text book and they all agree with him.

Here's the thing I know I must be doing something wrong I get in a cast (hard ) and after 1 week I start doing really well and the pain goes down than I come out of the cast and start walking using my foot more and more and the pain starts to come back. See this time when the cast came off (9 weeks ) I had the BIG lump of scar tissue and I knew this is going to cause a problem and it has.

I was going to go to acupuncture but the day I got the cast off I was feeling pretty good so my Pod said do you want to wait and go at other time because it might aggravate your foot and nerve,I said yes I will wait. I chose to go back to PT to re build my muscle in my leg since I lost it all.My muscles are coming back so I am happy about that.

Sometimes I just get so frustrated and other times I do just fine even with the pain. I know I could be worse off like Beverly had said there are worse things besides PF and TTS ,so I am very thankful for that.

Thanks to all for letting me vent sometimes it just makes me feel better that I can sit here and write to people that understand and that care......I love this board and most of all the support.....

Laurie R PS Tomarrow is a new day and it will be better than today ....


Re: Losing hope ......I lost hope a long time ago

DaNita on 6/15/00 at 23:41 (021901)

I have been fighting my pf for going on 5yrs. I have had 3 surgries on my left foot and one on my right. The surgeries were unsucessful! This has totally changed my life as I once knew it. I have also been diagnoised with Fibromyalgia. I was told that some of the stiffness in my feet is from that. I have been to no less than 7 doctors, they all say they cannot do anything for me that I will have to learn to live with the pain.( before surgery, they said they could fix me right up, WRONG! I have only gotten worse.) I have lost all hope that my feet will ever get better.
thanks for listening.

Re: Losing hope ......I lost hope a long time ago

Nancy S. on 6/16/00 at 05:33 (021905)

DaNita, you sound like you've been through a whole lot. I'm sorry you've lost hope -- I hope you can get it back. How are you coping with the pain, and does anything at all work for you in fighting the limitations caused by this? (I know you've been on the board before -- I've seen some of your posts when I've done searches on topics.) Would you be a candidate for EWST? --Nancy S.

Re: Losing hope ......

Rick R on 6/16/00 at 06:46 (021906)

Sorry to hear you are still struggling to find the path to relief. If I know you Laurie, after a few moments of being down and a little support, your fighting spirit will be back. Take sloace in knowing some of us have managed to beat this or at least get control. Keep on fighting!!

What a hoot on the 4 week cure. They gave me three weeks, missed it by a decade and a half!! Worse yet the second and third doctors that knew I had been at this for many months, still went woth the silly three week prognosis.

Rick



Re: Losing hope ......I lost hope a long time ago

Laurie R on 6/16/00 at 11:29 (021917)

Hi deNita,Rick and Nancy,
To DeNita first of all I am so so sorry I am here running my mouth about all my pain and you have have had this for 5 years my heart goes out to you.What do you take for pain??? 7 doctors ? I have had 6 so far for this.My Pod told me NOT to let anyone cut my foot and he is a foot and ankle surgeon,he said it could make things worse even tho I am in all this pain right now I don't want surgery at this point.I have PF and TTS.my very best to you DeNita....

Rick, Thank you so much for your reply,I am feeling better today and the pain is not so bad (not yet) but I just got up.How are you doing??? You have always such a nice and caring person.PLEASE post us and tell us how you are doing......

Nancy,
I know you were posting to DeNita but I still had to reply to you.Thank you for all your support to us all even though you have all your own pain going on ,thank you for thinking about us......

Today will be a better day !!!!! I will not let the pain take over me today...My very best to all.Laurie R


Re: Losing hope ......

dks on 6/16/00 at 13:23 (021922)

I had a cast on for PF it didn't work either! I understand how frustrated you feel! It is just a never ending battle with my foot and the pain. Hang in there Laurie.

Re: Losing hope ......I lost hope a long time ago

Nancy S. on 6/16/00 at 14:37 (021931)

Hi Laurie, from the sound of it, I still think today that you should enter your wad of scar tissue in the Guinness Book of World Records -- BEFORE your PT breaks it up and gets rid of it for you and you have no claim to fame. Good luck to everyone --Nancy

Re: Losing hope ......

UK Mark on 6/17/00 at 10:01 (021956)

Stay with it kid. You're having a bad day, dont think about it too much, You will have better days. Dont give up hope, things will be better than this!