Vent about Permanent Neuropathy
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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!"
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Bosum - so sorry it's a rough day. I do hope the neurologist will have some "new" ideas. This is a safe place to whine since we've all been there. We can get angry together.
BlownAway and Maryna - thinking of both of you.
I do have a solution to the cleaning. Just don't. I clean my sink & toilet & shower. The rest just has to stay the way it is. So there's LOTS of dust on the tables, and of course on everything else. With my LE, I just don't do well pushing a vacuum back & forth, even the light weight Shark. So I take my shoes off before I come in and just don't vacuum. Solution #2 - don't invite anyone under the age of 60 to visit. Or make anyone younger take off their glasses at the door so they can't see the dust. Disclaimer - I am aware this only works because I live alone and have no kids or pets, but it's very 'freeing'.
I went to a podiatrist at the recommendation of my PCP about my numb feet. I'm trying to start walking again to get the weight bearing exercise I need for my thinning bones. I'm walking on a treadmill so I have handles to hold on to when my legs get weak. But I kept getting blisters on the balls of my feet that I couldn't really feel until they were huge & broke open. His suggestion was to go to a specific shoe store & buy new shoes, but oops, those shoes start around $300 and go up over $400. Not happening. I bought a pair of light weight Nike's with memory foam insoles on sale for $44.00 Not the ultimate solution but much better.
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Bosum - we were cross posting so sending more hugs back at ya.
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BosomBlues,l
Please let us know what your neurologist says, if it is anything like around here you have to wait quite a while to get in to see one. I have been twice, the last time I got a nurse-practitioner, she was good, she did some tests and watched my gait and checked reflexes and told me I didn't have to come back unless I wanted to. Maybe we have to look at the positive side of things.....after my first appointment I realized the doc was looking for signs of ALS, Multiple Schlerosis and/or Dystrophy, Auto-Immune Diseases, and on and on. So I guess it could be worse!
As for house-cleaning, I have hired a gal who comes in every 3 or 4 weeks. I get things picked up (I tend to clutter) before she gets here, and she mops floors, dusts, vacuums and cleans bathrooms. If cleaning is left to me, I will work on about part of one room in a day, otherwise I won't have the energy to do the other things I need to do. I live alone too, and don't have a lot of company. Paying her to come here is well worth it to me. I also have a partial tear in my right rotator cuff, happened while I was on chemo, and is getting worse, it limits the use of my right arm. I am having an MRI on it next week.
Yesterday I was in a situation where I had to stand on concrete floor for about 2 1/2 hours, it was pretty uncomfortable after a while, I was afraid last night would be really bad, but not as bad as I feared. Standing for long periods not good!
I hope today is a good day for all of us! Bosom, I pray you can get your meds straightened out, sometimes they are part of the problem while trying to be the solution.
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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
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Hi, all,
Sorry you are both having a hard time; it is definitely not fun having this. I have been trying to exercise and build up strength even though I don't feel like it, and now my rt. knee has been hurting! My knees were one part of me that didn't hurt before so this is very annoying. Today I am tired, it would be so nice to wake up and go through a morning without being tired, ugh.
And I notice too that things seem to be different on different days, Wednesday I had lots of pins and needles, Thursday numbness and fatigue, and so on. When I do feel okay, I tend to overdo things, then am extra tired the next day. It is hard to make plans, never know what I will feel like.
Bosom, I don't know why neurologists are so hard to get into, just a shortage, I guess. That has been my experience too. I have my freakout times too, I have been trying to help myself by playing mental games with myself, by writing down the negative feelings (fear, anger, panic) for one thing to get them out. I was also advised to do meditation twice a day, by lying down and repeating a 4- syllable mantra over and over while doing diaphragm breathing, Your mind will wander, just go back to the mantra. It is calming, with deep, regular breathing. I set a timer for 10 minutes, am going to work up to 20 minutes at a time. I don't know what else to do.
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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.
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Bosum - my LE is breast & truncal. I'm normally very vigilant. I don't want it to progress to my arm (s). I wear sleeves & gauntlets for repetitive activity and when flying and wear a compression bra 24/7. I watch out for cuts or mosquito bites & treat them quickly. I do MLD most every day and head back to the LE/PT when I have a flare - usually due to my stupidity.
Looking forward to hearing what vitamins were recommended.
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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.
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Garden Gypsy: I 'm glad you are approved for the disability, I have thought the same thing, that I would like to have a part-time job now, but I can't think of any job I am fit to do. I am okay financially, but my husband is gone, and I feel I have something left to give. I have also learned, and have also been told, that one of the best things for neuropathy is to be distracted from it. Too much time alone leads me to dark places in my mind
I also share your frustration at not being able to exercise properly. I have always been very active, and now feel very limited in what I can do. The latest thing to kick in is knee pain, I wouldn't be surprised if it is because the muscles in my legs around the knees are just so weak that they haven't been able to support them. So this week I have cancelled all exercise plans, unfortunately knees still hurt, and pop and crack. What really set it off was standing on concrete for 2 + hours last week after being in an (gentle) exercise class. And yes, everywhere you turn you are being told to exercise to battle all kinds of disease, how do we do that??
I don't know if there is any benefit to knowing what kind of neuropathy you have; my GP says it usually follows the same pattern, although in some people it stays in the feet and ankles. I think the diabetics are that way for the most part, but they can also have it to different degrees. We chemo people are more unpredictable, and I think can have it more systemically. No matter what kind it is, the treatments are the ones you know, there is nothing new out there, as far as I can tell. Have you tried the Lyrica or Celexa? I have not, but tell myself I will if I can't take it any more.
Big hugs, Mary
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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.
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all these painful tests. Reminds me of when years back the vascular surgeon had me hold my hands in ice water to confirm I had Raynaud's. So it was official, but didn't change anything. Just was agony for nothing
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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?
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Verygood point Mary! The poor circulation might have kept the poison in our feet and hands longer!
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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.
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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.
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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.
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i was able to tap into my long term disability as the balance impairment from the numb foot made me fall. Broke a rib last year. Can't bea liability on the job
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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......
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Hi, Gypsy,
I think the free exercise program offered by your cancer center sounds great, every oncology dept. should offer that, I think. Very good that they will monitor you closely and hopefully you won't injure yourself as I did, by overdoing things.
I am also glad you are getting rested up, and ready for the next step!
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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.
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Hi, Cinnamon,
Wow! First I would like to say I am so sorry for all that you have been through, what a journey you have been taking. So I understand that you had TN cancer and chemo in 2002, and then Her2 Cancer diagnosed more recently, and are now undergoing the final drugs of that chemo regimen. You have also been diagnosed with HSP. I am also TNBC, as you can see by the info under my post.
I agree with you completely on the point of there being a strong possibility that the chemo worsened the HSP, which was likely lying latent in your body, and might never have become active. Of course we can't know that, but in my own case, I know that after chemo, physical problems I considered minor before chemo were strongly affected and bother me much more after chemo. Doctors have told me "but you are older now, Mary". And that's true of course. I noticed the tingling and buzzing in my feet after the first dose of Taxotere. I told my MO and he said, "Oh, but it will go away when you finish treatment." Well, it didn't, and has only gotten worse. The buzzing and tingling are bearable, but the weakness in my legs bothers me a lot. My General Practitioner doc says it is a normal progression of the neuropathy, but who knows? My brother died at age 60 8 years ago of a very, very rare brain disease called Creutzfeldt-Jacob Disease; it is a horrible, fast-moving disease, but also has the benefit of being quickly fatal. It came from who-knows-where, it was called sporadic, which means nobody knows why he got it. There is also a familial type of that disease. There are certainly a lot of things that can happen to us.
I did read about HSP and there are many similarities to the sensory-motor-peripheral neuropathy. What it all boils down to for me is the fact that it seems that there is nothing to be done about any of it. We can only deal with the symptoms and live as well as we are able.
It is all certainly a lot to swallow, to be stricken with a life-threatening cancer and to survive, and then to be stricken with one of these nerve diseases that has no good treatment. And then, in your case, to be stricken again with the HER2+ BC. May I ask how old you are, Cinnamon?
I'm glad you have found us here, and hope you will keep in touch. I can't really advise on what you should do about continuing treatment. I know a few people who have treated for the HER2+, and it is a long treatment journey. In my own case, they shrunk my doses of Taxotere after I kept complaining about the neuropathy. My MO retired on the day of my last chemo, and my next MO didn't really approve of the way I had been dosed, but it was a done deal by that time. Does the drug(s) you are getting now exacerbate your symptoms? That is definitely something to discuss with your MO.
Good luck, best wishes, talk soon, Mary
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Hey Mary! I feel like you completely understand! For years, I dealt with the peripheral neuropathy, but I felt I was called a hypochondriac behind my back. I was so sick of everyone saying it was just age and believed it myself at times. I was only 35 when I had my first chemo in 2002. The CIPN started in 2002, and I was diagnosed with HSP in 2013! I didn't aggressively pursue a diagnosis at first since I thought it was due to the chemo. I was telling my friends of the same age about my lingering symptoms about 5 years later, and they all agreed that it was not age and that I should see a neurologist. I would get really busy at the office or with the kids, etc., and put it on the back burner, but eventually I was diagnosed after wasting some of my time on the wrong doctors. I felt elderly before my time. Then HER2+BC hit me in June 2016. You know how fast everything goes after that. I had to put HSP on the back burner again. I was already mentally numb from the HSP. I was like "whatever" when they discussed my treatment plan. The worst is over! I've defeated BC again. I am so blessed. Guess what? One of the Herceptin side effects is peripheral neuropathy! The PN is much worse. I can't even hardly walk now or get up from a chair. Joint pain and weakness are also side effects of Herceptin as well as HSP, so nothing new here. Oh well. Hopefully it will get better after Herceptin infusions end in December and not stay like before. By the way, I am a big vitamin/supplement (Protandim, CoQ10, magnesium, turmeric, B-12, D, etc.) fan. That's about all you can do for HSP symptoms. I also went to the warm therapy pool at the gym before all this. I have Anemia and Neutropenia and have been advised not to go right now. I don't feel like it anyway. I really miss it though. It does wonders! Regards, Joy (Cinnamon is my dog.)
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Hi ladies....I've been away for a bit, just taking a break. I still haven't had an actual dx'd yet, but my previous symptoms seem to be getting worse. I have almost constant tingling in my finger tips now, feet are constantly cold and I've noticed this awful creepy crawling feeling at night in my legs and arms. I'm having zinger and sharp pains in my feet too...hard to describe actually. But the fatigue is awful, I'm not sure what this is about but I'm constantly tired. I'm just a mess right now.
I lost my job in early February and now insurance is gone so seeing a doctor isn't possible right now. I'm not sure how much is Femara, neuropathy or just plain depression causing my issues. I'd like to run away, but I'm too tired lol.
Anyway just wanted to say hi. Thx for listening. I hope for relief for everyone.
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I haven't posted much because I have not made much headway in the past 6-12 mos. What I had hoped was going to be temporary does seem to be sticking around in a permanent way. I have a milder form than a lot of you are reporting because mine is just the feet and, of the feet, it is mainly the balls and the toes; and, of the balls and toes, I do have some feeling back just not all of it. I have enough feeling so that they actually FEEL numb, if that makes any sense!
In the beginning I had the cold/crushed feeling. That lasted 1-2 years. More recently, I do experience the "burning soles" that a few have mentioned. I like to think that it is my nerves relearning how to transmit signals...but that is probably wishful thinking.
One other thing: Over the past few months I have had heel pain in one foot. My symptoms fit Plantar Fasciitis, but I've never been troubled with that before. I wonder if this is something that has been triggered by nerve damage? Has anyone else had this trouble only after their onset of CIPN?
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Hi, Joy,
I do know how you feel, except so far I have not had to deal with a cancer recurrence. I can't imagine, you must be very strong.
You were young when you had your first dealings with cancer, there are so many young women on these threads, I find it eye-opening. I was 61 when I had the cancer diagnosis, sometimes I think well, at least most of my life is over already. That sounds rather morbid, but it's true nonetheless. However, I was a very active and, I thought, mostly healthy person before that; and this has all come as a big shock to me too. I never felt elderly either until now.
I am hoping you will feel much better when you finish your HER+2 treatment. You say you have both anemia and neutropenia, it will be really difficult to feel good while dealing with those issues. I had neutropenia after my first chemo treatment, and ended up in the hospital for 5 days. If the hospital had blown up I don't think I would have known it, I was so weak and out of it. The anemia is going to make you very tired too. You have to give yourself some time to recover from all this, sorry you are given so much to deal with.
I take a lot of supplements too, although for the last week I have backed off a bit, since I realized I was taking way too much Vitamin D3. There was 10,000 IU hiding in my turmeric dose, and I was already supplementing with 5000 IU. So I had a blood test to check levels and will find out soon what that is. Then will get back on the supplement wagon. Say hi to Cinnamon!!
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Bosum and Tang~
I am hoping that you have not yet exhausted all types of health care, both conventional and alternative. Tang: I am so sorry you lost your job. That is a huge fear for me.
I was getting extremely depressed and decided to boost my antidepressant dose. I think the Lexapro is giving me the will to keep on fighting.
Perhaps the warm spring sunshine will bring us pain-free days!
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Tangandchris,
I don't know what is causing your symptoms, and I don't know the side effects of Femara. I do know about the weakness and fatigue that neuropathy can bring, and I do know that fatigue can be a long-lasting SE of chemo. Depression can also be a big cause of fatigue. The paradox there is that one of the things that really helps fatigue caused by depression is exercise, but exercise can be a challenge when you have neuropathy. I started an exercise program, and it really did seem to be helping my general mood and physical status, but then I overdid things one day and hurt myself, now waiting to be ready to start over again.
"I'd like to run away but I'm too tired." I can identify with that!
The cancer center where I was treated has a program that gives cancer survivors 4 sessions with a personal trainer, is there anything like that where you are? I really think it helps to get moving a bit. Just don't hurt yourself.
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Hi, Elinar
Your heel pain could be either thing you mentioned, could be a common foot problem, or could be caused by CIPN, or could be both. One thing I have learned while dealing with this CIPN is that there is no good answer to any question because there is just not enough known about the course of this condition. As far as I can tell, the most esteemed neurologist can't tell you whether you're going to get better or worse, or if it will be gone tomorrow. I wish I could answer your question!
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Elimar,
I've often wondered if there was a connection myself since I had CIPN and Plantar Fasciitis at the same time too. In all of my research, I didn't find a connection, but I do know that it is a common foot problem. However, I did connect it to weight, age, and improper footwear (thin sandals). I went to a podiatrist a few times and got cortisone shots, inserts, a night splint, and an exercise plan. I always wore proper shoes after that too. I could have doctored myself just as well and saved money. It took a long time to get rid of it, but eventually it went away. That was 12 years ago. I have had peripheral neuropathy all that time, and I have never had Plantar Fasciitis again. I have found that most conditions have so many possible causes that are not even documented or proven, and doctors just guess, just like us. If you report anything that is not on their little list, they are not even concerned with it, except for a rare few.
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