Chronic pain in both hands and feet.

Hello,

I am new here. I just signed up today. I am writing my first post on this site because this is my main concern I am dealing with right now. I've had pain in my hands and feet since November 2016, with all the symptoms of neuropathy. Although, my doctor thought I had carpel tunnel because they have similar symptoms. I'll try to make this short. I went to see a hand orthopedic surgeon and he recommended surgery immediately on my right hand without doing a nerve conduction test because I was in such severe pain for so many months. I asked my regular doctor, he said go for it. Therefore I did on March 17th of 2017. So it's been over two months and my right hand which had the surgery is about 60% still in pain. As well as my left hand from fingers to elbow and my ankles to all throughout my feet. Now my doctor thinks I have neuropathy. Which is funny because I told him so many months ago. Well it's not really funny because the pain is excruciating. I go in this Thursday for testing on both of my feet. My doctor has also suggested that this other doctor do a nerve conduction test on my right hand, the surgery hand, to compare results between my left hand, the nonsurgery one, which ended up not having carpal tunnel. He wants to see the difference between surgery hand and the non surgery one. I am over this pain, I'm sick of not being able to work, I have not worked at my job since February 1 and I had to tell my boss today I was not being able to come back until December but most likely not at all. She was not mad, but she was not happy either. It makes me frustrated, depressed, extra irritable, my self-confidence and self-esteem, which used to be super high, has plummeted, so I don't go out very much besides driving anyone of our four kids around or doing errands. Pretty much I stay at home doing chores, some of which I'm not supposed to be doing because things are too heavy for me to be lifting, but my OCD kicks in and i just can't help myself. I'm very neat, tidy, very organized, clean, I like the things in the place where they're supposed to be, in other words, I just can't stand a messy house. So therefore I do it because a couple of our four kids are extremely lazy and don't do a lot of chores. Oh, also I have really painful scar tissue in my right hand from the surgery. I've googled it and some sites say it's normal, some say it's not normal. I cover it with a Band-Aid every day because I can't stand looking at it for some reason and I don't like it being touched or accidentally touching something because it is a sharp pain that is extremely painful. And I have a very high tolerance for pain. Does anyone else have scar tissue issues that cause excruciating pain when accidentally bumped? Because I can't get any answers regarding that. Anyways, I thought I was going to make this short, which I didn't, sorry about that.

I would love to hear any feedback on anybody's thoughts or helpful hints on the scar tissue or getting some nerve pain damage relief.

Thank you in advance.

[JenDxbc]

Dear Honey11,

Neuropathy is a very painful condition I have been living with for over five years. Mine was a delayed onset due to radiation and chemotherapy. There were several people that helped make a huge difference in my life. 1- My counsellor (never met her, we chatted on the phone) 2- My neurologist 3 - My Mindfulness instructor 4- My black Labrador. I am married 26 years (thankfully) with two kids in their 20's. I could not have coped with my health problems alone. Try to continue to reach out for supports outside your family. If you are dissatisfied with any of them, keep looking. Second opinions may be needed. Gradually, with time and understanding you can make changes in your life that will move you towards a "new normal". Hope this message is helpful. Feel free to write back. Jennie

[Hidden in reply to JenDxbc]

Thank you for your information Jennie. I really appreciate your personal experience. Are you still in pain quite frequently? Im 43 and if I have to deal with this pain for the rest of my life, I would love to know your pain level, how frequent you're in pain, how you manage it without having to use pain meds, which I don't like to do, or any other advice you can give me. I finally go see a Neurologist in 2 weeks and I'm really hoping for some answers. The nerve conduction tests on my feet came back normal, as did my surgery hand. She said I didn't have peripheral neuropathy, but I could have a different type of neuropathy. She is recommending an MRI next to see if something is pinching in my neck causing these nerves to be pinched/damaged. I just don't understand. I have quite a few of the causes and most of the symptoms. I sat in my car crying when I left that appointment. I am thankful to have my husband, kids, one sister who lives near me, and my husbands family. My dad and stepmom recently moved out of state and my mom passed almost 4 years ago from pancreatic cancer. She is who I want and need the most. My other sister lives out of state. I'm the youngest of 3 girls, but I feel like I don't have MY family. My friends can be counted on 1 hand, and they are helpful as much as they can be. I am excited to see my new therapist today as she seems like a good match for me and my numerous issues. I just want to feel normal or the "new normal" like you mentioned.

Again, thank you for responding. I really do appreciate it. 💐

[JenDxbc in reply to Hidden]

Dear Honey 11,

I am 51 now and have had neuropathic pain since May, 2011. I am in some degree of pain most of my waking hours but thankfully when I do sleep....I am PAIN- FREE! So at times I will wake up and just lie still enjoying the moment before I move. So zero to ten is my pain daily level.

Everyone seems to have a different treatment but one trend I have seen is a drug called Lyrica (or Pregablin, Gabapentin?as well I think). You can research it and seek advice from your Neurologist if you want. I get emotionally down so I take it with Effexor and that keeps me level. Both meds have side effects that dull the pain.

Anxiety and Sleeplessness are other problems I coped with until I realized I needed to address them. My family physician was who I saw.

Boy cancer is so unfair. I am sorry that you lost your Mom at an earlier age than many. I am dreading that part of my life as it is approaching with both of my aging parents.

Good for you for finding a therapist. We all have numerous issues so I hope this person is a good match. Be kind to yourself. You hold many of the answers you are seeking. Jennie

[Patmcf1 in reply to JenDxbc]

I was recently diagnosed with poly neuropathy and I take lyrica for it, it does help but I am trying to find the cause and find a minefield of info out there, statins may be a problem so have just stopped taking them, my doctor said okay as my cholesterol level has come right down and I have been dieting and am eating very healthfully. I have stopped alcohol altogether for 4 weeks now with no benefit at the moment. Aspartame is said to be bad for this complaint as well so may stop the soft diet drinks too and see what happens. My b6 level was high so researching that and will keep everyone informed on this site.

[JenGorm in reply to Patmcf1]

I already had a diagnosis of PN due they think to genetics i.e. High arches , no reflexes and claw toes.

It caused heavy legs and aching calves but in the main manageable .

I started taking statins following a very stroke in Dec 16. I took them for 3.5 months and without doubt they escalated my PN significantly

But no one including GP or neurologist agrees with me .

Da ily aching legs it's feeling of extreme heaviness , twitching and restless at night.

I've started taking aged garlic CQ10 and Alpha Lipoic Acid .

Stroke consultant doesn't want me to take bits because they affect me Stoke drug " he thinks " . Just feel no one understands the whole picture

[JenDxbc]

Dear Honey 11

I hope your appointments are helpful. For my pain I have also tried accupuncture...But I just hate any kind of needle. I bought a cheap TENS machine and it does have positive effects. I recently had my family doctor prescribe medical marijuana. I found a vaporizer that uses the buds so it keeps the cost way down. Puffitup.com. I adopt black lab breeder dogs once they retire from breeding. The one we have now will retire this fall. She is a real sweety and loves hugs. I continue to try different approaches. I think that is key for me. Again, hope this helps. Jennie

[Hidden in reply to JenDxbc]

Thank you for all your input and kind words. I just threw my bottle of Gabapentin in the trash. I was on it for a few weeks, and my Dr said to up them to twice a day recently. The last few days, I've been getting dizzy when I would stand up. Just thinking it was normal, plus it's been really hot. But, it happened 3 times today, and 1 of the times I passed out on the back deck. That made my decision right away. In the trash they went. I've been googling the other ones. Hopefully, something new will work.

Yes, cancer is awful. She went within 18 months too, but partly because she quit chemo because she didn't want to live her life like that and it had spread. I miss her so much. I talk to her all the time. Doves are always around cooing also. That's a long story, but doves have a big meaning regarding my mom and my grandpa, her dad from 1 years old. She never knew her biological dad. But, that was her dad and our grandpa. My sisters and I all wear her ashes in a Dove pendant on a necklace and we also have purple cancer ribbons tattooed on our left forearms for her. She got mad at us for doing that, but we already had tattoos, so I don't think she was too bothered.

I hope your parents are healthy and get to live a full life. You as well. And the rest of your family.

I've thought about acupuncture. Not sure about that yet. I think I would be able to handle it, but I don't think I like the idea much. Also, I'm waiting to see if the neurologist has any answers. Which I hope he does.

Anyways, thank you again for your sweet words and your very informative messages. I really do appreciate them. The words in one of your messages were, "to be kind to myself and that I hold many of the answers that I am seeking." You don't know how much that is true. I have been really learning how to try to love myself more and take care of me first. Haven't quite got there 100% yet , but I'm working on it. So those are very meaningful words to me. I'll talk to you soon!

[Hidden in reply to JenDxbc]

My neurology appointment went well. He's extremely thorough. Waiting on results of 10 different blood tests. I heard acupuncture might work. Just got my medical marijuana card. Need to go to a club, but my 6 year old daughter is always with me. I love Kat with my dogs and cat. It helps relax my anxiety. I do need the get more active, but I hurt. I know it'll help some of the pain and definitely my mental issues. I'll check out that website right now. I like edibles. We can get buds for free from numerous friends and family. Good there, but I don't smoke until evening time. Thanks for the advice. Have a great day!

[JenDxbc]

Dear Honey 11,

You sound great. I hope your blood work gets you some answers. Thorough doctors can be hard to find. You are very lucky. My daughter is 22 years old this fall. I wish I could spend more time with her. We are very close. But she is living an hour away now...and life gets in the way. My neuropathic pain is about the same these days. I walked maybe 3-4 km today. The cooler temperatures really make a difference to the swelling and pain of my left arm. Looking forward to crisp, cool days. Keep me posted. Warmly, Jennie

[JenDxbc]

Honey, I forgot to mention something. And you are very organized so you may have thought of this.... Perhaps you should consider taking your sister/ close friend with you to your doctors appointment. They can take notes or record the information while you listen to what the doctor says about your blood work. Just as a support. They may have nothing to say and order other tests. Or they may have more to say about pinched nerves etc...I just feel sad when I think of you crying alone in your car or feeling overwhelmed without a support person. Been there, done that! It sucks. You deserve better. Think on it.

[Hidden in reply to JenDxbc]

Hi. My 10 blood tests all came back normal. They were looking for vitamin deficiencies, Lyme Disease, Celiac, (I'm happy that came back normal), and the others too. They were more looked by for reversible and treatable things that might have caused this nerve damage. My neurologist knows I have some type of neurology. I have an appointment in a few weeks to see him again. He put me on Amitriptyline at night time so it'll help the pain for the next day. And my PCP put me on Cymbalta to take during the day. So far, the pain hasn't been unbearable. It's absolutely still there, but lowered it some. I don't remember if I mentioned I was in Neurotin, but the side affects hit me pretty good. I fainted and that's when I immediately threw the bottle in the trash. Plus, now I also have low blood pressure so I have to take something twice a day. I only do once a day though. All these medications, along with my anxiety and bipolar meds, gave me a lot very thing in my mouth, Thrush. I'm finally getting rid of it. I've had it for about 3-4 months. It's absolutely disgusting. The prescriptions for it did nothing, then I tried a few home remedies. Nothing until I read about Gentian Violet. It's tastes nasty for about 20 minutes and stains my tongue and inside of my mouth a deep purple, but it's taking it away. Besides wanting to cut my hands and feet off at times, I wanted to cut my tongue off too. I'd much rather have the pain than the other. Thank goodness it's slowly going away. But..... I still don't have a 100% definitive name to what I have. It's really frustrating. But, I deal. My 18 year old leaves to Southern Cali from Northern Cali a couple days after I go visit my middle sister in Texas. So, I'm sad about that, but I know she needs to spread her wings. Just my first born plus she's moving closer to her dad, who was not and still is not the nicest guy around. But, he buys her love, so off she goes in her Mercedes( he bought) to school near him with a friend and he's getting them an apartment. I can't compete with that. I think if my mom was here, she would stay. She was Gramma's Angel. Now my mom is her Angel. They were extremely close. I wish my 6 year old had her around. She used to have my stepmom and they were pretty close, but they just moved out of state. All she has as a gramma is my step mama there in law, who is great, but has a good amount of different kind of issues. My real mother in law, passed away from lung cancer a few years before my mom. My moms obituary picture in the newspaper was of her holding our youngest in the delivery room. She was happy and healthy. I could just talk and talk about my mom, but I won't. She's here with me and my kids. I'm trying not to think about it, but the anniversary of her death is July 29th. At least I have a ton of memories, all her furniture, kitchen stuff( which is a whole lot), as she loved to cook, and many pictures of her. That all helps. It's funny. She is in my oldest daughters room a lot and she was a prankster, so I think she does things to scare my husband. He and my step daughter don't like going into her room. This might sound weird, but I've smelt her perfume twice in 2 different spots. The second time was in my oldest's room. Her perfume was so strong and lasted about ten minutes. I got a bit freaked out, but I talked to her and it calmed me. Do you have any grandkids yet? Wow! I didn't realize I wrote so much. Sorry.

I'll talk to you soon. I hope you have been feeling well! 🌷