what do you do when you can't do it anymore?

[michelleanne]

Hi,
New here, I found this site today and am hoping for some...help, answers, something? I have charcot's foot as a result of severe neuropathy. The neuopathy pain is constant and intense. Between the neuropathy and the charcot's foot I can hardly walk anymore. Had to quit work, my wonderful husband has taken over almost all of the housework, cooking, shopping, everything. I guess I feel like I'm losing more of myself everyday. So please some one clue me in, how do you all keep going? I need the secret answer. Thanks for reading my self pity paragraph. Michelleanne

[Boxerlover]

Hi Michelleann, welcome! Oh boy can I relate to your post! I felt exactly like that many times. I had a career that I absolutly loved and had to give it up and now I am on disability. My husband does so much of the things I used to do and all I can do is watch, I hate it. I used to really beat myself up and feel so guilty about it.

For me, I had to realize it wasn't my fault that I got sick and have chronic pain. That as soon as I feel up to doing what I can, I do and even though it may not be very much, it is something. I am blessed with an understanding husband but it took some time, effort and understanding.

I think more than anything it's a time issue. At first there is the mourning of who I used to be. Don't get me wrong, I would give almost anything to be able to go back and do all the things I used to do. But as time goes on I am finding things about myself that I never knew and have changed in some areas for the better, although by no choice of my own. I still look back and fantasize, and sometimes have a nice temper tantrum and pity party, but finally acceptance comes.

Now comes the fun of learning who I am in this new life and how am I going to navigate this unfamiliar territory. And I think it's different for everyone, how we larn to cope with having this kind of pain on a daily basis.

All I can say is surround yourself with family, try and find good doctors, especially your pain doc as that can determine your quality of life if you have good pain management. Pamper yourself when you can and know you are not alone.

Hugs!
Melissa

[Diandra]

Hi Michelleanne,
Glad you joined this forum. Like Melissa, I was cranking away in life, great job, great husband, loved life and then, wham, got sick and lost my job and onto disability. It was very hard in the beginning but, you have to train yourself to look for the good that is still in your life and focus on that, not the bad stuff. I would remind myself that had this been years ago when pain mgmt doctors were not around, I would have had to suffer instead of being given a menu of things I could try to stave off the pain.

Leaving work was hard but, spending more time with family and friends I loved was a plus. I found a spiritual, altruistic side of me that had not formerly existed and that was an amazingly positive thing. One other thing was, I learned who my true friends and family were...when you are down and out and need help, it becomes clear very quickly who truly loves you. I feel blessed there were many who reached out to help and understand my predicament.

If this is a new situation to you, Melissa is on the money when she talks about a mourning period. You initially feel like you are the only one on the planet who lives this way and there is a mourning period of mourning your past life. Once past that, with a good support group of family, friends, good docs and anything spritual that gives you hope, you will learn to cope. One of the best things of this situation is the dear friends I have made being on this forum for many years. I count them as some of the best folks in my life to date.

I have one piece of advice, if you are an independent person, it is really hard to ask or accept help at first. Get over that...there are people who love you and want to help...they will feel better because they could help you and you will get the assistance you need.

Welcome to this lovely forum with really nice, helpful, loyal folks.
All my best, Diandra

[A.K.]

Michelleanne,
I could not possibly give you better advice than Melissa and Diandra have just given you. Thanks for asking because I neeed to hear what they said too.

Thanks ladies for being so encouring and honest.

I would suggest that if you have not filed for SS Disability as of yet that you go ahead and do so. You are welcome to pm me for a little more info on all that. Just know that it's not a short or guaranteed process, so the sooner you get it started the better.

I am four years into my loss of employment, independence and have just had to even give up driving. This is not easy. I like you am blessed with a wonderful husband.

I know the #1 thing that has sustained me and kept me somewhat sane is my faith God.

I surely do hope that you will get the support you need and find the perfect doc and meds. Look for something to be happy about every day! Rent PollyAnna by Disney and watch it!

Welcome, A.K.

[GardeniaGirl]

hi there - your post left me wondering if you were struggling due to all the ways your life has been affected/changed by pain - OR - if you are struggling because your pain levels are very high on a regular basis and that is wearing you down.

I think those are separate, but intertwined issues.

I would have different feedback for each scenario.

I have gone through time when my pain level itself is too high that I can literally not find any relief unless I am asleep. It starts to make me crazy, hopeless, depressed, despondent, etc.

Then, I deal with the losses in my life that have come from having chronic pain. That entails a different set of of emotional issues and ways of working through that.

then there is - with the pain and limitations that I have - how am i supposed to have any semblance of a happy or fulfulling life under these conditions. That is tough too.

Anyway, maybe you will post more so we can better understand what you are having the hardest time with.

Gardenia Girl

[Mark N]

michelleanne, you have really gotten responses that nailed the answer I would have given you. I would just reinforce what Gardenia Girl said and make sure you push for adequate pain control. We don't get complete relief, or at least I have never eliminated the pain, but you need to get adequate pain relief.

I don't know enough about your situation to know if using an electric cart would improve your life. Do anything you can to hang on to as much activity as you can.

Eventually you will have to accept your new life once you do everything to reduce your pain and improve your mobility. Take every opportunity you can to stay connected with the people in your life. It is too easy to feel bad and withdraw from people, don't do it. I lost a career that I loved and I haven't found anything to replace it or the feeling I got from it. I have adjusted what I want out of my days. It is discouraging seeing all that we have lost but there are still some things we can do and as Diandra points out focus on what you can do not what you can't do any longer.

Welcome to this forum, it is one of the big things that helps me do it every day.

[Nana4&cntn]

Michelleanne,

Welcome to the Forum!

The others have given you the advice I would have. The biggest problem I had was the acceptance part.

Mark made a very important statement regarding pain control. As you probably know, pain makes everything worse! I sure hope you have a good pain doc.

I have found counting my blessings each day helps me keep a good, well better outlook on my situation. Your profile says you are a Grandmother! Aren't grandchildren the best thing for raising spirits and making life woth living.

I hope you keep posting and leaning on us for support.

A Fellow Nebraskan,
Kathy

[michelleanne]

Hello everyone,
Thanks for the advice, I could say you don't know how much I appreciate it, but I think you all completely do. My biggest problem is the level of pain. I didn't even know there was such a thing as a pain Dr. My neuropathy started around 8 years ago, and my Dr. didn't do anything about it because everytime I went into him he sent me for millions of tests. He is always thinking it is something else, luekemia, cancer, you name it, had none of it. Thank God. But it wasn't until a year and a half ago when my right foot swelled to over twice it's size that he sent me to an orthopedist and he took one look at my foot and said Charcot's foot. Never heard that one before. I had several broken bones in my foot and didn't know it. Neuropathy is wonderful that way, you can rip a toenail right off my toe, I won't feel a thing. But the stinging, burning, horrible pain of the neuropathy itself is horiffic. To make a long story a little shorter, I had to give up driving, I wear a prostetic brace, the neuropathy is up to my knees and in both hands(try typing with what feels like sausages, you know your fingers are there you just can't feel them besides the pain). But back to pain DR. My dr. has me on 2700 mg of gabapentin and 112 mg. of venlafaxine a day. I know nothing about pain meds. you guys seem to know a heck of a lot more, have been reading your entries. so any help with the pain meds and finding relief is sooooooo welcome. Thanks for letting me ramble. Michelle

[Leeaelle]

Hi Michelle ~ Others gave you such great advice. I just wanted to chime in and perhaps offer a little info on some meds for the neuropathic pain. For me, Topamax works wonders! I have nerve damage in the leg, and the burning, stinging & pain can be agonizing but the Topamax keeps it under control! I've tried Neurontin before but all that did was make me retain water, make me "goofy" and gain weight! :eek: I've been on Topamax for several years now at the same dosage (400mg per day) and haven't become "immune" to it yet!

Perhaps you can ask your doc about it. You have to titrate up the dosage until you get to the dose that works for you. I have had NO side effects whatsoever.

Bless your heart, my prayers are with you. God bless and I hope you stay with us here at the forum! Hugs, Lee

[Looking up]

Hi Michelleanne- I am a newbie also.
I can relate to your posts as I have Charcot foot and other ailments. Last year I was sent to an orthodpedic surgeon who specializes in feet and ankles by my rheumatologist. The ortho doc did surgery on my right foot in August and my left foot in November. My results have been excellent, but it is not typical. If you do consult a surgeon about your feet be certain that you go to an MD. Your case is complex.

What the surgeon did to my right foot was to totally rebuild the mid-foot with screws and plates, put pins in my 3 middle toes, took a joint out of my little toe, did a bunion on my big toe and most importantly for your situation- he relieved pressure on my nerves at the ankle and my knee. The last procedure is controversial, but it really worked to get my nerve function back. My feet were in the condition that yours are. The mid-foot was like my bones had melted.

To get help without or before the surgery, I went to a rehabilitation doctor who ordered some custom shoe orthotics and had me fitted for special (ugly) shoes. This helped me walk a little better, but was not the solution.

I have been to a pain doctor before, but now my rheumatologist handles my pain meds. He has put me on a long acting Morphine called Avinza, which has given me some of my life back. I have a diagnosis of chronic intractable pain from severe arthritis.

Great comments, these guys know their stuff.

Lynne

[Mark N]

Michelle, I was wondering if you have been able to find a pain doctor yet? I hope you are making progress as no one should have to suffer without more help than you have been getting so far.

[Lil E]

Lyrica is good for neuropathy with less side effects than Neurontin. You might ask for a long acting pain med like the fentanyl patch, MSContin which is long acting morphine. Google long acting opiate medications.

[Nana4&cntn]

Michelle, I also take Lyrica and have called it my miracle drug as it has calmed my sciatic pain! It does cause weight gain, but I will take the weight over the pain!

Call me and we will get together and have lunch and find you a pain doc!:D Plus I would love to meet you, we live so close to eachother!:)

Take care,
Kathy

[my_left_foot]

Dear Michelle and Lynne

I am looking for anyone who has Charcot's combined with high levels of cortisol, with or without Cushings. I am borderline cushings, but have high levels of cortisol in my system for at least 12 years. I have Charcot's in left foot, with full mid-foot collapse and multiple fragmentation of same. Wearing a CROW boot for 18 months now, bi-lateral neuropathy - 10 years, with constant and persistent tingling, tightening sensations. Have just found a link between high levels of cortisol and bone thinning. Can you let me know if you have had cortisol tests.

Melanie

[suede]

Melanie,

First let me say welcome to BT, sorry for your need to find us but know this is great place for support and help.

On that note I'm sorry I have no answers for you but I wanted to suggest you start a new thread so that your questions will be seen by more.

Just go to the top of the page and you will see where it says new threads and click on .

Best of luck to you.

Linda