Living with Neuropathy - Welcome to the group

hi @fiesty76, yes Turmeric helps in many aspects. It is a blood thinner therefore allowing the blood to better circulate to help with pain. Fish oil is another blood thinner. I take it as well because salmon contains ALA and ALA helps some people with their neuropathy. Since you take aspirin be aware that vitamin E is also a blood thinner. PLAVIX is classified as an anti platelet medication which works differently from a blood thinner. Ask your doctor for any concerns you may have. All doctors ask if any supplements are taken for a reason. Some supplements can cause a synergetic reaction with a medication.

@avmcbellar, I appreciate your sharing this information. I was also prescribed and take both fish oil and vitamin E but didn't know either of them also were blood thinners. Thanks, too, for the added information for Plavix and its being classified as an anti platelet med which works differently. Need to read more about it and also ask docs about the use of all three of these next visit. I'm wondering if those are also adding to my very frequent and easy bruising? Just thought it mostly age and the use of Plavix. Thank you.

@fiesty76 you’re welcomed. Since you were prescribed the supplements ask the reason why. I don’t know if you are taking prednisone, a corticosteroid, but that will cause easy bruising. Talk to your physician or your pharmacist as to the expectations of supplements and medications. Many can have side effects along with benefits. I always research before making the decision of what is right for me.

@amvcbellar, Yes, I was prescribed fish oil and vit E along with Lipitor several years ago for high cholesterol. Next was the stroke and carotid surgery and cardiologist prescribed Amlodipine, Plavix and baby aspirin; I stopped Metformin for prediabetes and that stopped the nausea but not wt loss. The nephrologist told me to stop all NSAIDS (Advil had been my otc pain killer), to Tylenol when needed and to lower vit C intake...no scripts for kidney...and little other info, alas. Also told to take multi-vit, vit D3, and calcium for osteoporosis along with Reclast infusion1/yr of osteo. Much more info than another would want to read...vbg

Until Meformin, I'd never questioned labs or docs instructions and had presented all with list of medications. The meds and otc supplements list is long and I wonder how closely each doc considers combined impact. Yes, meds can have adverse effects with one another or the diagnosed condition. I need to do more research and add to questions list for the next docs' visits. Thank you for your information and for taking your time to enlighten me!

Best to @colleenyoung for starting this group and directing all other Connect forums. Like Dr. Fauci, who reports little sleep during this time of Covid, I doubt our dear Director is taking as much time for herself as would be best for her. I so appreciate the information and support Mayo sites have given me and others. Thank goodness for this trusted resource!!! Hope all of our participants are staying well and safe.

Hi @fiesty76. We are all here at the Mayo Clinic discussion to help give you information from our experiences. I am a firm believer in questioning physicians. They can make better decisions for treatments with more accurate information.
Dialysis for medications takes place in either the kidneys or liver. The physician got you off certain medications to avoid dialysis in the kidneys in attempt to lessen the work load of the kidneys. Can you drink more water to flush out the kidneys? I don’t know if you have a water restriction with your diet? My 90 year old mother was diagnosed with renal disease stage 3. After many months of drinking 8 glasses of water daily, her diagnosis was no longer. She also had prediabetes but unfortunately later developed diabetes and was given an oral medication. She followed my instructions to control her diabetes through diet and exercise. With the results of her hemoglobin A1C, her physician discontinued the oral medication for diabetes. She continues to lose weight which also lowers her hypertension diagnosis. Through diet and exercises she is able to manage her cholesterol without any medication. Following a diet and exercise regiment is difficult but the benefits can be numerous. I like trying to solve medical issues with foods first, If possible, rather than medications because I don’t like dealing with the adverse affects.

Hi, I’m so glad to have found this support group! I have recently been diagnosed with idiopathic small fiber neuropathy. In February of this year I realized my feet were falling asleep unusually quickly and often. They felt numb without my noticing any stage of tingling. Then one day my hands went numb and that’s when I called the doctor. I’m seeing a neurologist who based his diagnosis on skin biopsies.

Is it common to have significant fluctuations in symptoms? Some days I have only mild tingling in fingertips and toes. Other times I may have several days in a row of severe pain and/or numbness with sleepless nights. A friend commented that the flare-ups seem to happen after days when I’m busy on my feet a lot. Can that trigger flare-ups?

I’m just researching treatments-medications, etc. One especially bad night I tried my home tens unit which turned out to be very helpful. Has anyone tried elevating their legs for milder pain relief? I’m doing that on short breaks during the day and trying to decide if it’s worth spending money on a special pillow just for that purpose. Comments? I would be grateful for any replies.

Hello @sprightly, Welcome to Mayo Clinic Connect. I've had idiopathic small fiber peripheral neuropathy for over 20+ years but only bothered to get a diagnosis 4 years ago. There are a lot of activities that seem to make it worse and also some foods can trigger flares. There is another discussion we started to share the different member journeys with neuropathy that you might be interested in reading and learning what has been shared.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

There is also a discussion where members share ideas on treatments -- Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

In addition to small fiber PN, I also have lymphedema and have to wear compression socks, I do think elevating the legs helps so one of things that has helped me is just to place a pillow under the mattress at the bottom of the bed to elevate the legs slightly. I think you probably wouldn't need to buy a special pillow but it may make it easier for you.

Do your legs swell during the day from standing or walking?

I am new with this group. Interested in learning more about living with periipheral neuropathy.

Daisy

Good Evening @madsoann8. Welcome to Connect. Have you received a diagnosis of PN or Peripheral Neuropathy? Are you currently taking advantage of any treatments or medications recommended by your medical providers?

Here are some stories by Connect members who have encountered Peripheral Neuropathy.
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
And these ideas might help get you started on some ways to reduce the pain of SFN, small fiber neuropathy.
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
Just take a look. Knowledge is power.

May you be safe and protected.
Chris

@madsoann8 Hello Daisy and welcome to Connect. You sure came to the right place for support, encouragement and experience. Do you mind sharing a bit about yourself... have you been diagnosed yet, how long have you been suffering, what type of peripheral neuropathy do you struggle with? I myself have Small Fiber Progressive Polyneuropathy from B12 deficiency and have struggled for 4 years. The key to survive PN (in my opinion) is to gain as much knowledge as possible about your disease, be your own advocate, persevere as best you can daily with positivity, follow a supplement protocol, eat healthy and keep moving your body as much as possible, and use heat/ice. Then of course there would be various medications, procedures, etc.. You will hear from others soon and our Mentor @johnbishop will get you started with helpful threads or @artscaping. Thanks for joining and I hope you find Connect to be a helpful place to learn how to live with Peripheral Neuropathy. Be well.
Rachel