Paresthesia, abnormal sensations

Is anyone suffering the pins and needles and pain in the feet which is continuous. Gapapentin is not working and the dosage is 1800mg per day. It is a most dreadful thing to have as it prevents me from leading a normal life. It's been two and half years now. You can't get used to it.

Hi there @fisbo. Ugh, I'm sorry you're having pins and needles and pain in your feet. Agreed, it is difficult to get used to.

Outside of meds and diet, have you explored using self-help tools like diaphragmatic breathing, stretching or meditation? Having heightened symptoms, and managing the acompanying emotional distress of life changes is stressful. How do you relieve stress? Do you have any hobbies or helpful distractions?

I swim which is something I have done for years but I stopped for a while due to these symptoms and the pandemic. My swimming is now a struggle to do. I manage 40 lengths 3 times a week but my swimming is awful now. My legs are the problem due to the condition and so it goes on. My interests are the usual but this whole thing with the pins and needles and pain is getting me down indeed.

Aw, @fisbo, keep your chin up. After experiencing physical changes and inabilities myself, I understand the fight that it continually takes to deal with neuropathy and chronic conditions. I'm right there with you.

Everyone's progression and stages of processing grief takes their own amount of time. Yes, I said grief because mourning loss comes in to play as we adjust to our body's changes. I'm not sure what stage you're at in your journey or how new this is to you, but please know the Connect community has been where you are and is there with you now.

If I can give you one piece of advice, it is to not give up on yourself or your value. Try to keep hope alive and think positive while continuing to problem solve. Sometimes our health is like a chess match, we have to always think of our next move.

I love that you keep swimming even though it's more challenging for you. I'm impressed by what you do already in that pool! Do you think modification or moderation may help make it any easier for you? Maybe adjusting lengths or time so you don't push/crash? Just some thoughts...

I'm rooting for you at your next neurology appointment. Will you come back with an update?

Thanks for this a lot to take in mind you. I was fine though until all this happened and my diet was basic. I don't over eat don't eat meat. Hardly any coffee. I can't see how diet can change things when all was well before.

I do understand. I was in top physical condition and surgery on my spine went awry. Long 22 yrs back.
We get older n our guts n stomach acid levels change. It all takes a toll. I can’t move anymore now. It will continue until someone stops it. Until I can find a Dr who will listen stomach enzymes help you absorb food n nutrients better too. Right before we eat we take them.
There’s a few drugs that work fr me but make me stupid.
Savella is oldest
Lyrica worked until I was allergic
Horizant is new
Nucynta is also new
These all unbalance th gut keep in mind.
Stay away from Diclofenac PILLS. I may have yeast in my gut forever now.
Stick w/ clean foods. It’s our best hope.
Following this page and neuropathy sites is huge info source.
🙏🏻 Fr you n good luck🙂🇺🇸

I do understand. I was in top physical condition and surgery on my spine went awry. Long 22 yrs back.
We get older n our guts n stomach acid levels change. It all takes a toll. I can’t move anymore now. It will continue until someone stops it. Until I can find a Dr who will listen stomach enzymes help you absorb food n nutrients better too. Right before we eat we take them.
There’s a few drugs that work fr me but make me stupid.
Savella is oldest
Lyrica worked until I was allergic
Horizant is new
Nucynta is also new
These all unbalance th gut keep in mind.
Stay away from Diclofenac PILLS. I may have yeast in my gut forever now.
Stick w/ clean foods. It’s our best hope.
Following this page and neuropathy sites is huge info source.
🙏🏻 Fr you n good luck🙂🇺🇸

Thank you for your lovely reply. I hope you manage your symptoms okay .....presumably they are similar are they? I will let you know what neurology say to me but I already know that there is not a lot they can do. I will tell them that it's got worse if course which it has and hope for the best outcome. Your right about grief though. This is certainly that I was fine two and a half years ago.

You're welcome. I have Central Sensitization Syndrome (CSS) with underlying conditions of chronic back pain, migraine, small fiber neuropathy and heightened sensory sensitivities. I manage better since going to Mayo PRC almost 2 years ago. Symptoms remain a daily challenge because they're a permanent part of me now but one that I'm better equipped to handle.

PRC offers cognitive behavioral therapy to help deal with loss, grief and much more that's incorporated into living in chronic pain. They also focus on reducing or discontinuing unnecessary meds, which in some case can have an adverse effect on CSS. Learning through therapy helped bring the reality together that chronic conditions aren't going anywhere and how best to work at finding acceptance and strategies for life quality despite them. And of course a big part of management is physical therapy. Motion is lotion as they say in rehab, and finding the proper way to move our bodies and stay active actually helps us more than hurts us. It's about moderation and modification of activities.

How have you been handling loss and coming to terms with your condition? It's a tall order to fill, but can be done with work. Do you speak with a therapist?

You're welcome. I have Central Sensitization Syndrome (CSS) with underlying conditions of chronic back pain, migraine, small fiber neuropathy and heightened sensory sensitivities. I manage better since going to Mayo PRC almost 2 years ago. Symptoms remain a daily challenge because they're a permanent part of me now but one that I'm better equipped to handle.

PRC offers cognitive behavioral therapy to help deal with loss, grief and much more that's incorporated into living in chronic pain. They also focus on reducing or discontinuing unnecessary meds, which in some case can have an adverse effect on CSS. Learning through therapy helped bring the reality together that chronic conditions aren't going anywhere and how best to work at finding acceptance and strategies for life quality despite them. And of course a big part of management is physical therapy. Motion is lotion as they say in rehab, and finding the proper way to move our bodies and stay active actually helps us more than hurts us. It's about moderation and modification of activities.

How have you been handling loss and coming to terms with your condition? It's a tall order to fill, but can be done with work. Do you speak with a therapist?