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-   -   Loosing my will (https://www.neurotalk.org/peripheral-neuropathy/208428-loosing.html)

Thaydrian 08-22-2014 09:59 AM

Loosing my will
 
Everyday, I wake up around 8:30 and cry. The pain is so unbearable I have to double my med dose just to be able to walk around before noon. The pain meds sadly are not working like they did at the beginning.

My wife I feel just hates me for being sick. She calls home to check on me and I can just hear the disdain in her voice when she asks the me the same question every time she calls, "How are you feeling today?" as if it is going to change and I will have gotten better somehow.

She called home today and caught me in tears crying because that is all I can do anymore. I can barely walk, haven't had a good nights sleep in years. I feel like I am really going crazy, I have never been depressed but I am guessing this is what it is like. And I am sick of doctors looking at me like I am some degenerate looking for pain pills! That makes me sooooo angry. :mad:

To think that I might never play music again is cracking my foundation. I pray, I talk to God, I ask him for strength to endure this difficult life. I can't loose my faith, but I feel it slipping away. Notr sure how many of you are Christians, but to the ones that are, please pray for me, and I will pray for you. Thanks for listening. Blessings to you all, hope you have a pain free day! ~Thaydrian

hopeful 08-22-2014 02:19 PM

Praying for you.

If you need to double your pain meds to get up and going you need to talk to your doctor. Double dosing you will run out sooner then you should. Doctors will question you on what happened to them.

If you are in this much pain and the doctors you have are not helping find a new doctor.

anon1028 08-22-2014 07:20 PM

hey bro,
I get PN from a head injury some time back. It doesn't get as bad as yours sounds, but I have other symptoms to make up for it :)

First, maybe its time to contact a therapist or psychiatrist before your depression becomes worse. Nip it in the bud, so to say.

Second, I don't think your wife would call you at all during the day if she weren't truly concerned, The question she is asking is routine and my girlfriend asks me that too every day.

Also, give this doctor another chance and then Get a new doctor if you are unhappy with this one. Keep looking until you are satisfied . It's your only choice. I have found two good ones recently after eight years, a neurologist and a psych...you have to keep searching if your current doctor isn't helping. the right doctor can make a HUGE difference.

Hang in there bro

Aussie99 08-22-2014 07:46 PM

Quote:

Originally Posted by Thaydrian (Post 1091042)
Everyday, I wake up around 8:30 and cry. The pain is so unbearable I have to double my med dose just to be able to walk around before noon. The pain meds sadly are not working like they did at the beginning.

My wife I feel just hates me for being sick. She calls home to check on me and I can just hear the disdain in her voice when she asks the me the same question every time she calls, "How are you feeling today?" as if it is going to change and I will have gotten better somehow.

She called home today and caught me in tears crying because that is all I can do anymore. I can barely walk, haven't had a good nights sleep in years. I feel like I am really going crazy, I have never been depressed but I am guessing this is what it is like. And I am sick of doctors looking at me like I am some degenerate looking for pain pills! That makes me sooooo angry. :mad:

To think that I might never play music again is cracking my foundation. I pray, I talk to God, I ask him for strength to endure this difficult life. I can't loose my faith, but I feel it slipping away. Notr sure how many of you are Christians, but to the ones that are, please pray for me, and I will pray for you. Thanks for listening. Blessings to you all, hope you have a pain free day! ~Thaydrian

Hi. I truly empathise with you and have been in your shoes and think everyone has been in that place where enough was more than enough. It could be from neuropathy, back pain, fibro, ms, or any other health issue. In my opinion Your wife is calling & checking on you because she loves you, not because she has disdain for you. You are in a dark place right now but you have a wife and a home and that is something to be grateful for. Don't let this illness rob you of those things. I am sure your wife is scared too because this is happening to both of you. Acknowledge her feelings if you can and thank her for her love and support and remember you are not alone. If you can look into physical therapy, light swimming or anything to get out of house and work on keeping your muscles active and working. Wishing you good health.

St George 2013 08-22-2014 11:30 PM

Hey there Thaydrian :)
 
Having neuropathy is a very heavy load to carry....both physically and mentally. I never now what each day will bring......of course as soon as I put my feet on the floor I know :)

I am just beginning to put my 'team' together. It's very frustrating and takes a long time it seems. My neuropathy came on suddenly about a month after I finished chemo.....went into chemo as pre-diabetic. I was lucky in that I had a PCP that I had used for almost 6 years. She immediately knew what was wrong and started running tests and gave me hydrocodone 7.5-325. Since all the tests didn't show neuropathy (large fiber) I went to a foot and ankle dr. because I trusted my PCP in her saying it was neuropathy. After the 2nd visit I asked him to do a skin biopsy and it came back that I had severe small fiber neuropathy. The nerves are basically dead in my feet. Test results were 0 out of a possible high of 15.

Just telling you this because I'm still on this journey....I've used a local neuro (we only have 4) and last month he told me he had done all he can and I need to find a pain mgmt. specialist. Since I'm in Georgia I've made an appointment with Emory in Atlanta. Feels like I'm starting all over again.

My PCP has taken the next 2 years off to be with her young children so I've had to use someone else at that clinic. This was the first time I've had to 'ask' for pain medication and it was very uncomfortable for me to do so. But Dr T was very nice and understanding. Also told me not to put all my eggs in the Emory basket (even though this is a satellite clinic of Emory in Atl). Since I was becoming tolerant to the hydro 7.5 he increased me to 10-325. Can't tell that it's helping any more than the 7.5 was. I'm guessing I need to try something else.

Didn't mean to write a book but just wanted you to know that you have to be your own advocate. It can be hard and very depressing. I only drive now when absolutely necessary so getting to dr's appointments means someone in the family has to take off work. Which I hate. I seriously need to see a mental health professional but just haven't decided how I can do that yet. I'm guessing they will want to see me once a week. I can drive but then I'm in bed for 2 days trying to get over it.

I'm so sorry for the pain you are in and I understand. My feet and hands can't take much before I'm at a 10+. By that point I'm hobbling just trying to get somewhere to lay down and more times than not in tears.

Please see your dr and discuss your pain mgmt. with him. If he won't work with you then find another dr.

And please keep us posted or just come on here to vent.

Debi from Georgia

Dr. Smith 08-23-2014 06:14 AM

Excellent observations/responses all around.

Thaydrian, I've been through it too, from the pain & depression (known as the vicious cycle) to folks (& DW) asking me how I am (or if there's anything they can do for me), to loss of abilities (livelihood/hobbies/interests) & dreams.

For me, knowledge has definitley been power (and a form of salvation). These experiences & feelings are normal/typical/par for anyone with chronic illness, and well documented. They are a form of grief. Being aware of these facets of humanity, and being able to recognize them for what they are as they are experienced/occurring, has helped me immeasurably to cope and survive.

Hope they're helpful,

Doc

Sallysblooms 08-23-2014 11:34 AM

Do you have an Integrative MD? An MD that can help with supplements and nutrition? There is a book called "Minding my Mitochondria" and it is good. Dr. Terry Wahls is also about to have a new book out also. The mitochondria/nerves have to get what they need so a good doctor that knows how to help is important.


It is scary and we all understand. Just remember it can get better, you just never know! :) What all are you doing right now for the nerves? I might have missed that post.
http://img.photobucket.com/albums/v4...gflowerbg1.jpg

Electron 08-25-2014 10:18 AM

Thaydrian, I'm sorry for your pain. Read the book of Job of course, who was in the same situation as you. My interpretation is also that your wife probably cares about you. Thank her for taking care of you and being concerned, even if you don't think she is. My wife asks maybe every few months. Remember this is difficult for a loved-one too.

Maybe if you could tell us a bit about yourself, we could help. Maybe you have on a different thread. What do doctors believe is the cause of your PN? What have you tried for relief (and don't say "everything":)). What type of doctors have you seen? What do you eat? How much do you move around? Do you exercise?
Ron

v5118lKftfk 09-02-2014 11:09 AM

Good thoughts and well wishes
 
I don't have any great words of wisdom. I am just send you loads of good energy, along with everyone else, to help you find some strength.

AussieDebbie 09-03-2014 09:29 AM

Perhaps it's not disdain but frustration. She most likely feels helpless, in that she wants to do something to ease your pain but its out of her control.

My hubby asks about once or twice a month, and I can tell he's disheartened that I'm not getting better. He's significantly younger than me (13yrs difference), so I live in fear of losing him. He is faithful, it's not that I fear losing him to another woman, but that one day he will have had enough of taking care of a woman who is more 'needy' than his grandmother. That scares me. So I act braver than I am. I collapse in pain when alone. It sounds as though you do too. I get how lonely that is.

I find this forum very therapeutic. Just knowing that there are others like me who will read my words, empathise with my struggles, and offer genuine support makes this more bearable. The folks here are amazing, you are in the right place.

Hope you sort out some new meds soon and get back on track.


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