Vent about Permanent Neuropathy

MinusTwo,

Yes, unfortunately I don't think it's going away, I am almost 3 years from when I started chemo. But there are miracles occasionally! Let us here be some of the miracles.

I have been in some bad states of mind about all this, am trying to head in a more positive direction. I know what you mean about not being sure if you want more feeling, the feelings aren't good!

Seems neuropathy is a very unpredictable thing to have, especially chemo-induced; nobody, including neurologists, seems to know exactly where it's going to go. My friend the rehab nurse told me to keep fighting it, so I'm going to try that.

Mary

BosomBlues,

Some days are definitely better than others, I hope today is a good day for you! I know exactly how you feel. When the weakness first was coming on I went to a big mall with a friend, in and out of a couple of stores, and suddenly I couldn't go any more; I felt weak and exhausted. I walked out and found a bench, then waited for her until she was finished. I didn't know what was happening, short of breath and heart pounding, chest tight. I talked to doctor, and soon was having a battery of heart tests, and found out there wasn't anything wrong with my heart. I had probably had a panic attack brought on by my unexplained weakness, because it frightened me so much. The only good thing: I found out my heart was in okay shape!

The psychiatrist that did my EMG (nerve conduction study) said that the weakness occurs because the nerves are not signaling the muscles properly. I don't completely understand it either. He also told me that since the neuropathy I have is motor-sensory-peripheral it affects the whole body: if I get sick with a cold I will feel worse than I used to feel. I have noticed that my sense of smell is sharper than it used to be. I went to a concert and it was so loud I covered my ears partially. The people I was with thought it was fine. I can't tolerate heat very well anymore, I was in Florida last fall and after the first day that I spent partially in the sun, I spent the evening in bed with cold towels and a splitting headache. After that it was beach umbrellas for me.

Yes, I'll never stop hoping that our nerves will regenerate!

I have been helping with charity bike rides for a few years, and I have seen recumbent bikes used as well as several kinds. one of the worst to haul in is the mounhtain bikes, those big tires make the riders tired sooner when on pavement. I do not ride, no lungs or heart left for that, I usually help with a sag (safety and gear) truck.

Hi, Bosom and BlownAway,

I hear you too, I am there with you. The neuropathy I had during chemo got much worse after chemo and then seemed to get a lot better, but a year later it suddenly got much worse.The burning and tingling came back somewhat, but the worst part is the weakness in my thighs. I had a nerve-conduction test and it came back as sensory-motor-peripheral neuropathy.. No one can say why, and nobody seems to know much about it, except to push pills at you.

Every so often I panic and go see my GP, I did this a couple of weeks ago and I asked him if I was going to be paralyzed. He said no, but it might go into my arms. I told him it was already in my arms. I think I already told you that my friend the rehab nurse told me not to give up, but to fight it. I have been trying that too, I see a guy to help me with exercise once or twice a week, and I go to a class of gentle yoga stretching. I walk as much as I can, but the weakness kicks in and after that I have to rest. It is very frustrating! I am trying to keep calm and have a good attitude, it is difficult at times. I have begun meditation, when I remember to do it. The most important thing I have to learn is that I am not going to be like I used to be. If I can ever accept this reality, and try to be the best I can be now, it would be better, I think.

I am sorry about the statins and being prediabetic, Bosom, are you taking Femara for osteoposis or osteopenia? I will find out in April about Labs, cholesterol etc. Hoping to avoid going on drugs for all that but who knows? It is a cruel mess we find ourselves in, I don't like it when people say "But you are here to talk about it!"

Bosum - we were cross posting so sending more hugs back at ya.

Left foot killing me today worse than in 9-10months! Yesterday it idn't hurt, but was numb and i lost my balance and fell

Today wike up with my forefoot feeling like it was in a vise. Burning and aching. Hurts to bend my toes. This is so crazy

I am trying to walk regularly now too - but I'm doing it at the gym on a treadmill where I have handrails to hold on to. It just makes me feel safer. Also my arms are not hanging at my sides aggravating the LE.

Mary, Minus Two, Bosum, Chloe~

I am jumping back in to say hello. I am so sorry that you are all still here!

I have been out of work now for two weeks, and today the insurance company declared me eligible for long-term disability. It's a relief to know that I will have some income, but I am afraid the neuropathy is going to push me into early retirement from teaching. At this point, there is not a job on the planet that I can do.

Last week I was in Mexico. It seemed like being warm was helpful, and I tried not to walk too much. Swimming felt good. Besides walking and standing, I cannot figure out what else triggers the onset of the serious pain. I haven't walked a lot today and my legs are killing me right now.

I am currently on 900 mg. of Gabapentin daily. A few nights ago, I actually took some Hydrocodone. It relieved the pain, but it's a damned sneaky class of drugs and I am terrified of becoming an addict.

I am begining an oncology exercise plan tomorrow. We'll see what they say about my condition. I believe that exercise is one of the most important things I can do to fight reoccurence. This is not helping. And because of how hard things are with the neuropathy, I am also afraid to start my Letrozole.

I will see my onc this week, as well. I am pretty sure she will increase my dose of Gabepentin.

Is there any reason to have testing done to see what kind of neuropathy it is?

Hugs to all.

Minus and Bosom,

I want to try the recumbent bike again, am waiting to see if my knee pain calms down, or if that's something else I have to address. Like you, Bosom, I wonder how much of this weakness is from lack of exercise or if it's all from the nerves not signaling properly, as the psychiatrist told me.

Minus, I am sorry you also have to deal with the lymphedema, sounds like you have it under control! My GP gave me some sample pills to try out, also nutritional supplements.

One pill is called Cerefolin NAC......its' active ingredients are 6 mg. L-methyfolate, (as Metafolin), Algae-S Powder (Schizochytrium), 2 mg. Methylcobalamin, and 600 mg. of N-Acetyl-L-Carnitine.

Other pill is called Metanx.....L-methylfolate (vitamin B9), methylcobalamin (B12), pyridoxal 5'-phosphate (vitamin B6).

I am taking the Cerefolin now, I am not sure if it helps or not. It is primarily prescribed for cognitive function, but apparently is also being prescribed for neuropathy. Metanx is prescribed for neuropathy, although the package says diabetic neuropathy. I was already taking all the B Vitamins, but was told these pills have it in a form that is better absorbed by the body.

Bosom, I will bet you are right, those supplements I mentioned are probably out-of-pocket, not sure. I have several boxes of free samples, so don't know yet. I can understand your sadness at being unable to walk with your son, I don't understand the path of this neuropathy either, don't think anyone does. But I always have hope!

Chloe's mom, I also have Raynaud's in my hands. As you said, nothing to be done about it. Right now having a warm bowl of oatmeal, that always works! I wonder if having such a condition predisposed us to be vulnerable to neuropathy after chemo?

chloe's mom, after thinking about it I'm not sure. Having cold extremities should actually keep the medication out, since the blood is not carrying it in as much as to the rest of the body. I was thinking of the Raynauds as being nerve-related, which I was thinking might have predisposed us to be more sensitive in the area of nerve response to the toxins.

What I don't understand is why some people have CIPN (chemo induced peripheral neuropathy) in only feet and hands, and why in our cases it has gone much farther, affecting all of both legs. And hands.

Chloe, Mary, Bosum,

I am beginning an exercise program that is overseen by my hospital's oncology department. It is meant to get onc patients back in shape and lasts 6 weeks. There is lots of monitoring by the oncs, PTs and trainers. And it is absolutely free.

The onc in charge says that, for most of us, it all just takes time. I feel that I need to get some courage up. If we don't keep moving, the rest of our body deteriorates.

Thanks for your input; I don't think I will have that nasty PN testing done just yet. I will if I need it for an insurance diagnosis.As far as disability insurance goes, the cognitive dysfunction supplied the evidence needed for a claim.

I have been on disability/medical leave for a few weeks. Instead of being on my feet all day, I am getting the relief I need to recover. I eat when I want to eat, rest when it's essential, and I am addressing my survivorship in the best way I can. My FMLA ends at the end of May. I will cross that bridge when I get to it.

Bless.

I applied for SS Disability and received it after only 5 months which is the shortest time it takes unless you are stage 4 which is approved almost immediately. I just took a leap of faith and quit my job that I had been with for 18 years. I applied the next day.

As posted before, I have chemo related cognitive issues and CIPN. My pain is down the back of the neck, spine, between shoulder blades and down arms, legs into hands and feet. It is a constant deep ache and also shooting "zinger" type pains that come/go quickly. No sense of smell and I can taste very little. Finger tips are numb and feet burn on bottom. Joint pain/weakness......

I had treatment for Triple Negative Breast Cancer in 2002, and I had permanent peripheral neuropathy since then.  There's a reason though.  I found out that I have a rare neurological disease, Hereditary Spastic Paraplegia, finally confirmed by genetic testing in 2013.  I just wanted to vent about it and let everyone know my thoughts.  My journey toward diagnosis was so difficult.  I saw neurologist after neurologist, telling them about my thoughts on my Long-Term Chemo-induced Peripheral Neuropathy.  Of course, this information was sending them on the wrong trail.  Then I finally saw a neurologist that had the knowledge to check on other things and was convinced that it was not what I had thought.  He then sent me for genetic testing to confirm his suspicions.  It's been a long road, and I am now fighting Social Security for MY money that I paid into the system for 30 years!  Anyway, I do think that my disease was exacerbated by my chemo in 2002.  I believe that it would have never been as bad as it is now or have ever even been diagnosed because of it.  My symptoms were masked because of the chemo.   And now, I have HER2 Breast Cancer in the other breast!   The treatment is causing peripheral neuropathy on top of peripheral neuropathy which means that it is worsening again!  I am talking numbness, tingling, balance, weakness, etc.  The worst of the treatment is behind me now with the HER2 Breast Cancer, and I only have 12 more Herceptin treatments.  My main concern now is should I aggravate my peripheral neuropathy anymore or just quit the Herceptin?  My breast is gone, and I've received chemo already.  The Herceptin is just a preventative.  On the other hand, it is the standard regimen and a "miracle drug", and I definitely don't want cancer anymore.   I don't want my HSP worsened either.  It may mean a wheelchair.  It is just a matter of QOL.  Any thoughts?  I also want some of you others to keep in mind that I thought what I had was due to chemotherapy, when it was actually another condition with many of the same symptoms.