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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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@jesfactsmon When I became disabled/dysfunctional because of primarily psych issues, it was necessary for my wife to go to the never ending doctor appointments with me because I would forget what was said as soon as I left the office. And sometimes our memories conflicted.
We lived for around 17 years in Albany, Oregun ( not a typo, but a phonetic spelling for non-Oregonians), transplants from California (my wife) and New York (me and our adopted son). Our daughter is our token native Oregonian.
For ten years we lived in a village of 247, before retiring to our current home, which was as close to Bend, where there is excellent medical care, as we could afford and have some ground as a buffer between us and the rest of the world. Since then, in '04, real estate has done nothing but go more and more expensive. Since Apple and Facebook have built massive call centers in our town, and keep adding more to their complex, I'm sure that prices are a reflection of the influx of people who make better money than the local average.
One of our favorite drives is up and down to Gorge, especially in the fall. And OHSU in Portland is the place to go for advanced medical care. Unfortunately, neuropathy pain in my feet has curtailed our recreational driving, but there are some beautiful places closer to home - the John Day fossil beds and the Painted Hills, which is especially beautiful after a rain. The High Desert museum is a great place to visit south of Bend.
Time to go to the first church service since March.
Have a good day, Hank
Jim
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2 ReactionsDrove through Bend once back in the early eighties. It was a peaceful place back then. Seems like between neuropathy and now the virus, some of us have been quite severely curtailed as to travel. All the more reason to like where you live!
Hi there.... I'm completely new to this and its the first time I'm reaching out to anyone on my latest issue. Don't know where else to start and I'm hoping someone can lead me in the correct direction. I THINK I have a nerve issue. My feet hurt from the balls of both feet into my toes. They aren't excruciating but theres always pain or more like a numbing pain that feels more like I sat on my feet and they fell asleep. It kind of stings, feels numb and aches all at once., even when I'm off them.
I'm putting Voltarin gel on them, taking Aleve and using Aspercreme. I can't tell if it helps because I use these things twice a day and don't know how I'd feel if I didn't use them. Maybe they aggravate them, don't know.
About 7 months ago I noticed (before the pain) that I was getting callouses on my toes so I went to two podiatrists and they agreed that I had severe fallen arches (probably from wearing "slippers" for 35 years living on Kauai, HI. I never wore shoes with arches. One of the podiatrists had a $500 mold done of my feet and I got insoles made from them and wear them pretty much all the time plus a 1/2 inch lift under my right heel because they agreed my right leg was a 1/2 inch shorter than my left. I was amazed that after wearing these things for 2-3 months another issue I was experiencing improved! I was beginning to lean pretty severely to the right and going forward from my torso up and I had pretty severe pain in my left hip/low back area but that improved like they both said it might but that improvement was followed by this foot numbing pain. I suspect that I'm still standing on the balls of my feet and gripping with my toes for balance. At least that the only thing I can think of. The calluses improved but now this new pain has descended upon me.
Try as I might I can't seem to lean back onto my heels and stand and walk using my whole foot to support me .... from heel to toes kind of thing, I'm walking I think and standing on the balls and toes. What's odd is even after a good nights sleep they feel swollen and the nerve type pain is there from the moment I rise. Doesn't disrupt my sleep however. They feel like that portion of my foot was shot up with Novocain but the Novocain is wearing off so I'm feeling pain.... tingling, swollen balls and nerve like pain. Its becoming a real nuisance to say the least!
I decided to look on this site hoping to find answers as to what direction I should go simply because it feels like the nerves are asleep and hurting at the same time. So if anyone knows what conditions MIGHT be causing this it would help me considerably rather than me going through every single nerve type condition, as there seems to be many. I don't even know what sort of doctor I should try to see or if there could be an underlying condition that looks and feels like this but is actually something else that is hopefully easily fixable. With this Covid virus going on I don't want to take up doctors precious time to rule things out or perhaps expose others or me to the virus but it is getting worse almost by the day.
A bit of history:
I'm just about 68 years old
I had active Lupus from age 20 to age 59 at which time it and the lupus induced rheumatoid arthritis went into remission.
I have osteoarthritis that is BTW also acting up quite badly in my hands where the ball above the thumb is and up through the fingers are very painful and get quite swollen (not in the knuckles however). I hope its not the rheumatoid arthritis! They are beginning to swell and hurt ALLOT! I do admit I've been using my hands much more than usual due to moving to my new home and gardening quite a bit of late. Perhaps its osteoarthritic like pain in my feet? Can osteoarthritis cause a numbing (pins and needles) type pain in my feet? My hands are getting so bad that it hurts to grip things. I'm sort of hard nosed and just try to push through the pain. I don't want to slow down.
I did call my doctor and he has ordered some blood work which I'll get this week. Hopefully that will tell me something.
So my main question is this: Can some sort of neuropathy be causing these things? Is there a test, labs or x-ray that would tell me whats what and what kind of doctor treats neuropathic pain? a rheumatologist or a neurologist or both?
So thats my story. I've enjoyed reading peoples entries. Any direction from any of you kind people would help me allot.... just point me in some direction. Thanks for all your time!
Cathy
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2 Reactions@cathylynch52 Hi Cathy and welcome to the group! Glad you came, and asking some very good questions too. You were excellent in describing your symptoms as well as sounding on track to what you think it might be. My advice is to ask your PCP for an expedited referral to a Neurologist based on your symptoms (and don't hold back on them either). Any signs of numbing should really be dealt with promptly and not ignored. Even a virtual visit can get the ball rolling...don't let Covid deter you. Nerve disease, or peripheral neuropathy, is my guess and the sooner treated, the better, for a possible more promising outcome. I have Small Fiber Polyneuropathy and was diagnosed via a skin punch biopsy. My cause was B12 deficiency. It sounds like your current Dr began blood testing but, a neurologist will order an extensive neurological workup. Have you had an EMG or Nerve Conduction Study? This can rule out Large Fiber Neuropathy. MRI's and CT scans may be helpful too. I'm sorry to hear of your health issues overall. Best of luck in your quest.
Rachel
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3 Reactions@pfbacon Evernote is an app on my phone and tablet and laptop where I create notes. One note is shopping list, another one is the alphabetical list of my hymnal collection, one for medications, one is a list of my ties (I have more than 500), one is for me to write verses I read in the Bible that were meaningful to me, and so on.
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1 ReactionHi Cathy, welcome. This has been a very helpful site for me in trying to understand and help my wife who has had chemo induced peripheral neuropathy (PN) for 6 years. So I just have a typical layman's background with a definite interest in this subject due to a desire to find answers on her behalf. So right up front I will say I obviously can't diagnose anything about your situation, but I can make a few observations (forgiveness requested if what I say from here out is already obvious to you).
Firstly, as to the things you are doing for the pain, the Voltarin, Aleve and Aspercreme, if you don't know if they are helping, stop using them for a day or two. Maybe then you'll know what if anything they are doing for you. Then reintroduce them one at a time to see which ones are helping. Secondly, in reading your description of your overall situation it sounds like you have had this walking imbalance a long time and fairly recently have corrected it with these new insoles and a lift for one foot. What struck me was that you still can't walk on the whole under surface of your feet, you still tend to lean mostly on the front of your feet and have a hard time using the heel portion. So your way of standing is still in an unbalanced state. It sounds like the front parts of your feet are having to work harder than they normally should have to which kind of explains why they are painful. One thing I would advise is when you start having these pains in your feet and hands don't "push through the pain". I tried doing that with a pain in my wrist once and it just got worse as a result. Better to try the opposite tack and give your hands a rest for a day or two, do as little as possible with them. See if they respond at all to that. When you say "I don't want to slow down" you need to think more about what your body wants. The pain is it's way of saying that what you are doing is making it unhappy. We are not spring chickens (you and I are the same age) and no longer have young bodies. As to whether you have neuropathy or arthritis in your feet, I had an MRI on my knee in 2018 and the doctor was able to show me that I had arthritis in my knee and where it was. Maybe your doctor could request an MRI for your feet. Many people on Connect have mentioned that a nerve conduction study helped their doctor determine if they had PN, so that might be a good thing to have done, just as Rachel mentioned a couple posts back.
It will be great for you just to know what is causing your pain. I hope you can get to the bottom of it. I know how frustrating this can be and I hope for you to be able to find some answers to all of this. Best to you, Hank
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3 ReactionsHello @cathylynch52, I would like to add my welcome to Connect along with @rwinney, @jesfactsmon, and other members. From your description it does sound like you need to see a specialist to get a diagnosis of what is really causing the pain in your feet. I think you may have described a possible cause of the pain -- mostly wearing slippers for 35 years. Here is some information that may be helpful:
5 Remedies for Flat Foot Pain Caused by Your Flip-Flops: https://www.healthline.com/health/flat-feet-pain-tips
Are you able to see a specialist at a major teaching hospital or the Mayo Clinic? I'm not sure if it is an option for you, but if you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
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1 Reaction@cathylynch52 Hi Cathy, I have severe peripheral neuropathy in the balls of my feet and toes. Currently in a trial with the DRG stimulator, day 3. I have such severe pain and I could not bear it anymore. I do not want to repeat what all us folks have already said to you, but one thing different, is that you need physical therapy in your feet. It does not help with pain or numbness, but can restore your feet to a more normal walk, balance, and foot strength. Ask for a physical therapist specializing in feet. Of course, all the other suggestions that people have suggested, as well. My best to you, and we people here are all the best. Welcome here.....Lori Renee
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2 ReactionsThank you, Jim. I will check out Evernote. Peggy
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1 ReactionHi Fred @fredjan2016 hope all is well. I am wondering how your Nalu Med stimulators are doing, are they working for you? Would love to hear an update as to how you've been doing with them so far. Thanks much, Hank