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So alone w/ TTS, PF, excrutiating pain; even family has deserted me

Posted by Donna H on 4/18/04 at 02:42 (149079)

4/17/02 -car wreck (other party's fault) nearly killed me. Guess I should be on my knees thanking God I still have a left arm, instead of being depressed that nerve damage & shoulder/neck damage cause me to drop things & feel like lead is on my shoulder. 3 wks after the wreck, my dr referred me for EMG for something I'd never heard of -Tarsal Tunnel Syndrome. I had so much pain-the burning, the 'shocks' so by the time I finally got to the ortho doc, I was being 'electrocuted' in both feet several times a day & neurontin was doing nothing. It took a yr before that idiot decided on surgery-when I was doubled over in such sudden, severe pain, that the moaning, groaning, scared a coworker so badly she thought I was having a heart attack until another coworker told her it was my feet. By then I could hardly walk, but wanted to keep working - even with TTS both feet, plantar faciitis which developed in both feet, & upper back injury. I have never walked w/o walker/cane since. Now on perm. disability-the TTS release was a waste.PF/TTS swelling/pain makes it so painful to walk @ home I just burst into tears.Just changed docs-back @ square 1 w/ tmt. Case going to court. I feel so ugly-can't exercise so 22 lbs jumped on me.Do you think anybody asks would I like to go shopping/movie/church? No friends now-they don't look as attractive w/ me stumbling along. Called my son 6x in 3 wks-still waiting for retn call. Daughter says she has to concentrate on work since she just bought a new house(single,no kids). Anybody else find people in their life disappear faster than a magic act after agony of TTS/PF, other illness/injury? How do you cope? I don't want to beg my own family just to spend a little time w/ me. 2 sisters,5 grown children-& the daughter w/2 small children & no car took the bus to come when I was unable to even get downstairs due to feet swollen, hurting severely.
Thanks for reading & any advice.

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

Suzanne D. on 4/18/04 at 07:01 (149083)

Oh, Donna, I am really sorry for your plight. Your past two years' experiences would make anyone depressed!

You have done a very good thing by posting here. There are many people who read and post who can relate to your frustration and desperation. It seems that no one understands foot pain unless they have experienced it. Maybe because everyone's feet 'hurt' at one time or another (although most have no idea what foot pain really is!), they just aren't sympathetic. They seem to think, 'Well, sometimes my feet hurt, too!', and they cannot fathom how heartless they are being to you. But it truly is a case of 'adding insult to injury' when they don't 'get it'. And most, if not all, of us have experienced that with friends and family.

With no personal experience with TTS, I feel at a loss to help you in more concrete means than sympathy. I can advise you to read The Heel Pain Book here (just click on those words) for better understanding and conservative treatment plans. Since you are starting back at square one, as you said, it would be very helpful for you to read that information.

I did go to the Tarsal Tunnel board here to see if you posted there and found that you did a few days ago but have received no replies. I posted again at the top, asking if someone can respond to you. Sometimes messages get 'lost' as they move farther down the page, and I am hoping that someone with experience with TTS will see and respond.

I hope it will help you to know that in my reading here for almost three years while recovering from PF, I have read of several situations in which people were crawling to the bathroom in the middle of the night because of the pain or using walkers, scooters, etc, and are now much better. It didn't happen overnight, but they did gradually get better.

Once again, I am so sorry for your situation, I wish I had more concrete advice for you, but I want you to know it is good that you have come here, and I want you to have hope. I want you to read The Heel Pain Book, and I want you to keep posting here. I hope more people will respond to you and that you will have better days ahead!

Take heart,
Suzanne :)

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

Carole C in NOLA on 4/18/04 at 10:06 (149087)

Donna, the man that I was seeing (and my only friend) 'dropped' me when I got PF back in 2001, just before Christmas. It really didn't help my state of mind! PF often causes people to feel depressed, and this accentuated my depressed feeling.

So now I know just how sincere his affection for me was (not very, apparently). I am now seeing someone else, who is not so shallow. And, my foot pain is gone by now. Life is a lot better, and it's nice to know that I'm with someone I can trust to stand by me when things aren't perfect.

I hope this helps to cheer you up a little! I am truly sorry that everyone is being so awful. Don't lose hope, though, because things are sure to get better for you, as they did for me too.

Carole C

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

marie on 4/18/04 at 17:53 (149096)

Hi Donna,

I checked your post on the tts board. I am sorry that I missed it. I skim very quickly there. Unfortunately I have no experience with accident related tts.....but do have experience with some of the social issues that you mentioned in your post above. I have tts and PF....I also have had disc problems....actually I slipped a disc today and am barely functioning because of the pain but wanted to spend a moment with you. People are just plain dumb sometimes when it comes to chronic pain. It's not happening to them so they don't understand and you can't make them unless you talk to them and let them know what you need.

No one from my church offered help, no one from work...I'm a teacher too....offered to help, family didn't understand the full extint of my foot problems. I don't even think my hubby and children knew how bad it was at first or understood just how much time is needed to heal and recover. They did eventually get with the program and now they are the best. I had to disappoint alot of people. I was a very active person involved with way to many things. I had to start saying 'no' and people who I thought cared about me became angry because I just wasn't the person I was before. I found out that I was alone with this thing....this scurge on my health.....I came here and a poster named pala gave me a lecture.

She told me to 'toughen up'. She made me realize that it's just simply the way it is. Chronic illness is frightening and folks are afraid of 'it'. Friends and loved ones haven't abandoned you...they simply have gone on with their lives....it's easier for them to stay away then to confront you and your pain. Unfortunately you have to confront your pain every moment of your life. I was and still am in a battle for my life. Not just my physical life but the quality of it. I made some changes...and it sounds like you will too. I figured out that people don't want to hear about all my grief all of the time. I come here because folks know and understand what you're going through....so come here. We can't take you shopping but we can tell you....YOU'RE WELCOME HERE AND AMONG FRIENDS WHO UNDERSTAND.

best wishes marie

The thing of it is

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

R C on 4/18/04 at 20:16 (149101)

Donna,

Sorry to hear of your pain. I can't add to what Marie wrote so very insightfully above. Please stay in touch and we'll get through this together.

R C

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

Necee on 4/19/04 at 00:26 (149118)

Donna, I'm so glad that you are posting here. For help, encouragment, and understanding, you've come to the right place.

I don't have any experience with TTS, but I understand completely about PF. It's something that doesn't get better over night, and depression is always a concern because of that. Dealing with the pain, and not having anyone who cares or understands only compounds the problem....emotions can go off the chart, you expect your family and friends to always be there, and when they dissappoint you, it only makes matters worse. That is why it's so important to get hooked up with a support group, there are lots of folks here that can give good advice, and support.
Keep reading and asking questions, but most important don't give up, there is hope!

Necee

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

john h on 4/19/04 at 12:15 (149136)

Unfortunately what Marie says is very true. People, for the most part do not want to be around people who are always complaining about their health unless it is something they are dealing with. I rarely ever mention my health problems to anyone except on this board.

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

Kathy G on 4/20/04 at 08:40 (149215)

Donna,

Like the others, I have only PF and chronic arthritis. I can only say that you have come to the right place for support and helpful suggestions. Sometimes you just feel overwhelmed and here you have a group of non-threatening strangers who you will come to know and respect. The support this board supplies is marvelous.

You don't believe it now but there is light at the end of the tunnel and things will get better. In the meantime, keep us posted and come back often.

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

john king on 4/24/04 at 14:02 (149484)

I suffer from chronic pain due to multiple injuries while in the service. I went to the VA pain clinic. What I got was a prescription for morphine. When I discussed the side effects of morphine I was prescribed more morphine. No one understands chronic pain except those who suffer.

Re: So alone w/ TTS, PF, excrutiating pain; even family has deserted me

Mary June on 4/26/04 at 23:46 (149614)

Oh Donna,
I can relate. It seems to me that I am purposely sabotaging relationships because I'm tired of trying to make friends, family, co-workers, and my boss understand. I have just been diagnosed for TTS/PF and Heelspur in my left foot after 14 months and 5 doctors, and 4 months ago the right foot started. I am paying for all of this and I can't afford it. I am a single mother with just one 15 year old son, I am still working 4 days a week as of last week and my boss is not getting it. I love my job in a large Souvenir store on the Gulf. , but it is killing me.
I don't know what the heck to do . I have failed all avenues of conservative treatments and can't have surgery until Nov.04 because BCBS considers this a pre-existing condition. I am running out of money fast and the future looks rough for me as well. I am so ready to throw in the towel at work and just crawl up and sleep and someone wake me up when it is all over. I feel at the end of my rope , too. but, we know, as mothers do, that we must tie a knot, pray a lot, and hang on... I am so sorry you have this awful pain, it is debilitating. As I sit here, on my day off, in a removable short walking cast on both feet, after sleeping and crying all day. I can actually cry with you.I never dreamed my feet would go out on me. It would be so nice to have somebody else to take over my responsibilites for awhile, so I could just think about healing. How do you do that? You Hang on Donna....
Love, Mary June,
Sorry this was so dang long, I need this group, too!