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Anyone else in the same boat?
@jimhd Yes, she did…return on this next Thursday and see what the quackie has to prescribe then…that wasn’t nice to say. Give the newbie a chance. This oldie is in mega pain and not a happy camper. All of the stress also has neuropathy in an uproar…whine, whine, whine. Also give my body time to adjust to a new foreign substance. Stuff happens. Currently I am feeling like your profile picture…downright pathetic.
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@jimhd~ Is peripheral neuropathy only caused by diabetes? I had mine years prior & my docs would say it’s from arthritis (never telling me which kind I had or how to treat/handle it). One doc might say a pinched nerve is the cause, or it’s from a past injury. I still think my diabetes being in the ‘pre’ stage wouldn’t warrant so much pain that I have to wear braces. ~sometimes we use recorded music at church when our pianist is out for a while, I hope you feel better.
This pretty much sums things up…
Hi Jim, @jimhd
The “banner” is the bookmark icon, it’s purpose has been explained to me many times (but I’m still hazy on it and therefore don’t use it much) – it has something to do with marking something you want to come back to. I’m going to tag @johnbishop and see if he can provide more info and explain it again.
The pain is so severe today. Can only do the best I can to ride it out. Doctor in the morning. Dubious as to any answers. Very discouraged and so alone in all of this struggle. Sorry for others adrift on the chronic pain boat. Has to be some kind of answer-surely there must be. Crying surely does not help.
Hi, Jim. Hope you’re feeling better today. I’d done what you suggested, looking up the doctor – unfortunately, after my visit. Not impressive. I left my comments for the very reason you suggested. I see him again tomorrow, possibly for the last time depending on how things go. My depression seems to be getting worse daily, despite being on antidepressants. Time for a change I guess. I had an appt. with a good psychologist who helped me before, but she just cancelled, saying she’s too busy. I would think she, of all people, would realize how fragile her patients are.
Paracat~ please don’t give up on a new puppy friend! My income is rated as 80% below poverty. I have 2 Service Dogs & an antique cat. I truly believe when we talk to each other about animals, friends & family we lost that they will all get to know each other in Heaven & be there to greet us when we get there. At that time we will have a relaxed ‘knowing’ of being connected in peace & contentment.
As the Anniversary of Toby’s passing approaches maybe you will have strength to find a joy to mark the occasion. I like to go to a Shelter & take a caged doggie out for a walk, give them lots of love & tell them about my lost loved one. This can honor Toby & give another dog hope. Some say it is too cruel to take a dog out for a walk like this then leave. After years of doing so I feel it gives them hope, encouragement, fresh air & exercise. They need to interact with a variety of people-it will make them more adoptable. Next month is the one year anniversary of my dear sister’s death. She love’s doggies as I do. She has many in Heaven & a few of mine too! Message me if you want some suggestions on getting a puppy. There’s even ways you can Foster & receive money for food & Vet care. Please excuse me if I’ve been too personal.
Thank you so much lillyanne for your post. I go to the shelters all the time, but it never occurred to me that I could take them out for walks. What a great idea. You haven’t been too personal at all. I don’t know how to message anyone on here – where would I find out? The SPCA has low cost services and specials on dogs. They offered me one for $15. The thing is, I can’t pay all of my bills each month, so I don’t know how I will be able to take care of a dog. I think much of my depression stems from my financial situation – never expected to wind up like this. Thank you for your encouragement.
Hi Jim (@jimhd) and Teresa (@hopeful33250) – The bookmark icon is pretty useful. If you click on it, it saves a “bookmark” to the post that you can find for future reference by clicking on your profile at the top of the window and selecting My Bookmarks, then find and click on the link to get to the original post. I also use it by clicking the right mouse button on the bookmark and selecting “copy link address” then I past it in another post like this…the link should take you right back to Teresa’s post above.
I normally open up another tab for the browser and open another Connect window and do a search through the posts to find a specific post, then copy the bookmark link and paste it into the post that I’m working on in another window.
@paracat and all, to message a specific Connect member privately, click on their Connect username (@something) and click Send Private Message. This will send an email directly to the person. The How to Get Started on Connect link is in the left column on the bottom of each page on Connect…or you can click the link below to get there:
@lillyanne – My knowledge is limited regarding pn. For one thing, there are different types of neuropathy. There are various causes, as well. Diabetic neuropathy is perhaps the best known. Some neuropathy is the result of cancer or cancer treatment. If the doctor doesn’t know what type of neuropathy you have, they call it idiopathic. I have idiopathic peripheral neuropathy. Peripheral means that peripheral nerves are involved. As far as I know, feet, legs, hands and arms seem to be affected most commonly.
The neurologist asked if I had had trauma to my head when he saw neuropathy in my head – I fell from a second story window when I was two. The nerves in my feet may have been damaged during my work as a house painter, ladder work, scaffold, jumping or carrying heavy weight – an 80 lb 5 gallon bucket of paint in each hand. Regardless, he can’t say for sure. IPN started as pins and needles and numbness in my feet and legs, and gradually became burning pain in my feet, getting worse over the course of a couple of years. Neuropathy is also affecting my hands, bladder and brain stem, and may be associated with esophageal dysmotility, arthritis, choreiform movement in the back of my tongue, dizziness with buzzing and possibly ED. I feel like it’s overtaking my body.
So, multiple possible causes, multiple possible involvement, multiple kinds of neuropathy. I hope that clears up all of your questions. 🙂
Yes, I do believe the congregation will manage w/o a pianist. The neuropathy thing? As to why I have it still is a mystery. Combination of inappropriate meds and stress. My nervous system lies to my brain most of the time (well stated @jimhd ). This morning I feel like I am covered in cobwebs and cannot get rid of them. No spiders, but many of their webs.
No need to apologize for a poor memory. I keep hearing about short term memory loss to the point I told another that it makes perfectly good sense as I am 66 and the knowledge head is so crammed full that nothing new will fit.
The why of neuropathy, even if known, does not help with the discomfort and pain. All meds for this vicious villain were a disaster. At one of those lows where I do not have much enthusiasm left. Not a so much a self pity as the never ending battle with acceptance. At times I find myself thinking, “I am not Job”! An extreme thought.
Sleep last night was the usual…Do you notice the neuropathy less when you are moving? There are times that if I am not moving the tingling pain seems that it will cause me to lose my mind…Apologize if that statement sounds outlandish. It is true and possibly the mind will one day rest.
Seems many of us are discouraged-we keep moving on as best we can.
Life can at times be a defecation receptacle and it is a struggle to continue looking “up”.
Think you could bottle and share the truth serum???
Hope you rested well…A Capella worked for centuries.
@parus – not at all outlandish. It’s kind of the opposite of me. My feet eventually hurt less as they rest. Walking is the worst – well, the worst except for standing still. Even sitting, my feet hurt if I rest them on the floor. Contact hurts.
Pain definitely interacts with emotions. Sometimes pain causes emotion. In my case, I was being treated for major depressive disorder, along with a few other disorders, before neuropathy pain started, and as the pain progressed, the disorders grew worse, leading me to start thinking about suicide. Fortunately, I was able to begin therapy during that time, and am now in a much safer place.
I’m pretty sure that depression et al exacerbates pain, as well.
I felt myself today and went to church, which is an all day routine. Leave home at 9:40 am, church at 10:30. Lunch in town, usually fast food, but today we splurged at Shari’s. Fabric store, fill up at the gas station, grocery store, humane society thrift store, Goodwill and after a couple of hours of dog walking and rest at a park, picked up things at Walmart, and back to church at 6, home after 8. That’s our weekly Sunday. I’m always wasted when I get home. I often want to stay in bed, but Marilyn reminds me how much the music means to the people who gather on Sunday evening. So, I get up and do it all again. No, I never used to be like this. I served happily, for the most part, as a minister of music for 25 years, and later as a pastor. Sunday was part of my identity. I never wanted to stay in bed – until depression hit. Then, there were weeks when I had to call a minister to come and fill in for me. Two years later I was attempting suicide, and had to retire. I was only 55.
That’s a piece of my life. And now I have to stop and get to bed.
I agree completely, @paracat – a psychologist saying she’s too busy? How caring is that! I hope there’s someone else you can see. I’ve never had one tell me that. I’ve seen a parade of therapists, and I can’t think of one I didn’t like. Each one has had a hand in keeping me alive and somewhat sane.
Maybe the doctor will surprise you today. I hope so. Let us know how it goes.
Thank-you, that helps. I’ve never heard of cancer bringing it on. My docs always just said you have neuropathy with the same intensity as “u have hiccups”. They gave no follow through or answered any questions. I always thought it was my body trying to tell me something. I went a long time without insurance so I’m happy for what I have-just wish it was better. Mine sounds like yours with a few differences. Not too much burning pain in feet & ankles & hands just some. Most was pain like a tire rod being pounded into my calf bones & ankles of the leg that was paralyzed due to a broken neck when I was around 7. A car hit me & I flew 30 or so feet in the air & landed on my head. Similar. I’ve never heard all these things could cause neuropathy. Here it’s almost like they want you to have diabetes so they can blame everything on that & questions will stop. My pain starts as tingles, pins, needles, extreme pain causing me to rise up as my hands curve into frozen claws. This position makes my humerus & shoulders bend & spasm where my cancer tumors are. Hopefully they are getting smaller with treatment. Sometimes just numbness in finger tips. Another problem, I don’t know if it is related, is pain as if knifes are going through one side than the other of my bad knee and ankle with searing electricity. Sometimes it travels up to my lower back or just sciatica, then down flaring out at the back of knee, down mt calf to explode at my ankle & ooze into my foot tingling with burning pain. Is that normal for NP? I’ve had this since 1992 when I broke my tib/fib. They set it wrong (closed set crooked) & I was in different casts for over 18 months. There you go- multiple causes/involvement.
Jim, please forgive me for going on & on. I think I never wanted to “own” it so I never looked into it (plus I had a lot of other things to do). One search answered all my questions: https://www.emedicinehealth.com/neuropathy/article_em.htm#types_of_neuropathy
Now I’m wondering if that might be part of my optical problems! Good thing I see that doc next month.
@paracat~ I don’t know how to personal message, just thought all the doggie talk might not be best here. I’m on another website that lets you personal message. This site is much better because the other only covers one ailment. Believe me, I know all about the loss of income, identity, purpose, & future plans. It’s hard to find one place to get all the best answers, there isn’t one. Social workers suppose to help & patient advocates. They are good places to start. Write everything down. Start small, it might get overwhelming. I lived in a city that had an organization for people with ANY kind of disability. They were MOST helpful.
The best thing is to have a dog that is your Service Dog. That way all their expenses from food, grooming, Veterinary… is written off in your taxes or deducted from your rent if you have subsidized housing. I trained my first one by myself 15 years ago. That was sufficient than. I don’t know how the rules have changed. Some are different State to State. Back then all you needed was a doc to write a letter stating you needed one. He’s semi retired now, so I’m training a new one. I believe one change is you have to have a certificate from a school that offers a Good Conduct Certificate. They usually have them at Community Schools for about $15-$20. My teacher let me make payments.
Here’s a website that asks you to foster & they cover all the expenses: http://www.rpsm.org/ The program needs Foster homes to acclimate shelter dogs they then put into prisons to be trained & re-homed with some going as Service Dogs. Depending on your needs you might want to inquire on getting a service Dog there. You might have to live in their State, but you may be able to find a similar program near you. I found their site from this story: https://www.petcofoundation.org/love-story/jessica-dakota/
Another idea is to doggie sit a dog for someone who is away at work all day. If you are home most of the day. The hardest part for me is early morning & late at night when they need to go outside & my pain is at it’s worse. It might be a good way to start if you are getting use to any new weaknesses… to see how much you can do without a total commitment. I’m looking for a tiny one for a friend in a wheelchair & I will be backup caretaker to her pup if she needs to go in the hospital or something. I think it would be easier to have 2 little ones because my arm can only play tug a few seconds. Pups go on for 3 1/2 hours! I love it!! Best of luck. There’s a lot to think about & we can revisit this topic anytime. It’s my FAVORITE thing to discuss!
Totally understand the knife through the knees feeling…mine is from OA and bone spurs on my knees. Neuropathy is not for wimps either. No one has bothered to find the cause of my neuopathy-probably blame it on age like nearly every thing else.
Too much trying to figure out symptoms/diagnosis by perusing the net can at times do more harm than good. Best to talk w/ the doctor and would advise not telling them you know the problem by reading symptoms online-some of the info is enough to bring on an attack of apoplexy for the patient…not to believe all that is online is the best advice I can give,
Wishing you the best on your journey.
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