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chronic joint pain

Patteee
Patteee Member Posts: 945
edited March 2014 in Colorectal Cancer #1
9 months since chemo
I know I have neuropathy issues, and even after 9 months I am not seeing any changes :(
in addition? I am dealing with arthritis issues, all the joints of my hands, my knees and ankles- xrays show osteoarthritis in some of the finger and thumb joints.
I started to have problems AFTER I was done with chemo
have been working with an orthopedic hand surgeon and have tried everything from cortisone injections, to hand braces, to physical therapy, to around the clock advil for months and months, and some natural med that is actually chicken cartiledge that has shown some promise with joint issues.
The ortho is talking about hand surgery- teethering tendon in my thumb to provide some needed cushion. Doesn't sound like a fun time, but I am at my ropes end. I am in constant pain and feel like a criple.
Here is my question and hoping for some ideas from you my 5FU and oxy buddies :) I think the combination of chemo has destroyed or weakened the lubrication in my joints and hastened osteoarthritis issues. I also have moderate neuropathy issues in my hands and feet- and EEG confirmed that. Those who struggle with neuropathy know how painful it is, just not the numbness, but actual pain. So I think chemo did a number not only on my joints, but think I am dealing with neuropathy on top of it. Like a double whammy on my poor joints in my hands.
I am feeling like I need to press on with this and look at a neurology consult at Mayo. Does this sound reasonable? Of course it does, right? *sigh* I keep on looking for a direction with this and to be honest, feel as though I am getting a pat on my head from medical professionals. Almost like, "well, what did you expect after having chemo?" or "learn to live with it".
Any ideas, thoughts, heck support would be nice too, lol. If you were me, would you go to Mayo or press on with the hope that something can be done? I just can't believe that I have come so far in this cancer battle only to feel so defeated. Chemo may have destroyed the cancer, but it also destroyed my quality of life. I just want to be pain free.

Comments

  • chicoturner
    chicoturner Member Posts: 282
    chronic joint pain
    Hi Patteee, sorry to hear about your pain. Sometimes it just all gets to you doesn't it! I am stage 4 CC and finished 5FU and Oxy a year ago this past Sept. I have nueropathy in my feet and hands too. I will say my hands are doing better, much less numb and I am able to use them more. That is with the exception of my thumbs. They are very stiff. My GP says it is probably osteo-arthritis, brought on early due to the chemo. My thumbs pop in and out at times, especially when I sleep. It is frightening and painful. However, my real problem is my feet! I am numb, yet super sensitive. Shoes hurt as they touch my toes. Summer was fine after I found sandles that would stay secure on my feet. I can't grip to keep slings on! I teach and am on my feet a lot. I need shoes that are comfy but sturdy as I am often on the playground. Shoe shopping has ceased to be fun! But, I am learning to deal with it, as at least I can walk! I am on irriotecan and avastin now and fortunately have few new side affects! The oxy was a killer!(for my feet and hands, not the cancer!)
    Hope you get some relief soon! Jean
  • lisa42
    lisa42 Member Posts: 3,625
    acupuncture
    Hi Pattee,

    I'm sorry to hear of all the pain you're having to deal with. Although my pain wasn't as extensive as yours sounds, I have definitely also dealt with pain- severe pain in my left foot and also joint pain in my ankle, knee, neck, lower spine, and sometimes shoulders. I have really gotten some great relief lately through acupuncture. I know it wouldn't address the damage already there if that's the case, but I really believe you could get some pain relief. In fact, as I read your post and went to reply, I actually thought "oh yeah, I've had joint pain too" because I've hardly had any pain lately. I was really skeptical of the acupuncture at first, but I am completely sold on it now! I'd definitely try it if I were you. If your cancer center doesn't offer it, there may be places near you that offer it for either free or at a discounted rate. My cancer center offers it for free for their patients, which is how I ended up trying it- I thought what did I have to lose since it was free. It works and I'm sold on it!

    Best wishes to you-
    Lisa
  • robinvan
    robinvan Member Posts: 1,012
    OUCH!
    Hi Pattee,

    I am so sorry to hear about your joint pain and afraid that I cannot offer any help from my experience.

    What I can see as extremely maddening is the condescending attitudes around "Oh Well, What do you expect!". Yes, some cancer treatments bring their own risks and side-effects, which may include other chronic medical problems. As a patient though you should still expect the best of compassionate and competant care and not be held "culpable" for your suffering.

    What would I do... I would find a place where they can take an effective inter-disciplinary approach. I don't know the landscape down there. Also... aren't there some effective pain meds in the meantime! I'm currently on a combination of morphine, Naproxin, Gabapentin, and Dexamethasone, for the bone and nerve pain related to cancer in my butt. Sounds heavy and I would want a long term dose, but I am in no pain and have most of my alertness and cognitive capacity. (though not driving!)

    "I just want to be pain free!" And what is wrong with that! Yes... keep pressing!

    Hoping for you... Rob; in Van
  • ron50
    ron50 Member Posts: 1,723
    Hi Patteee,
    It

    Hi Patteee,
    It really does seem to go with the territory. But as my rheumatologist said cancer and chemo did not help but you were going to have problems at some stage with arthritis. I am nearly twelve years post stge 3 colon ca into 6 nodes. My life quality is diminishing before my eyes. I have been dx with sveral forms of serious kidney disease and treated with all manner of terrible steroids and blood pressure meds. I had a bone scan that showed arthritis in every joint. I now have to take methotrexate(another chemo agent) for the arthritis. And now the methotrexate has dropped my protein loss to almost normal levels. My nephrologist said that cannot happen with damaged kidney filters. He now believes that all along it has been auto immune arthritis attacking my kidneys,veins and nerves. I suffer neuropathy in both legs and left hand. The meth is an immuno-suppressant and is stopping some of the auto immune attacks. He will not change any of my meds as he thinks it may cause a flare. As a result I am always tired and have low blood pressure 90/60 in the morning. I have a scope coming up next tuesday and my gi is so concerned that she is admitting me to hospital to do the prep(I live alone). My nephrologist is of the opinnion that my current condition is the result of my serious malignancy and year of chemo. Just to make things even better I have been dx with a frozen left shoulder and that it will take 18 mos to 2 years to come good. I applied for a disability pension and was told I was not sick. The moral of the story is that surviving cancer for me was easy ,surviving survival is very hard. But we survivors are tough stuff so hang in there and just keep swinging,Ron.
  • Patteee
    Patteee Member Posts: 945

    chronic joint pain
    Hi Patteee, sorry to hear about your pain. Sometimes it just all gets to you doesn't it! I am stage 4 CC and finished 5FU and Oxy a year ago this past Sept. I have nueropathy in my feet and hands too. I will say my hands are doing better, much less numb and I am able to use them more. That is with the exception of my thumbs. They are very stiff. My GP says it is probably osteo-arthritis, brought on early due to the chemo. My thumbs pop in and out at times, especially when I sleep. It is frightening and painful. However, my real problem is my feet! I am numb, yet super sensitive. Shoes hurt as they touch my toes. Summer was fine after I found sandles that would stay secure on my feet. I can't grip to keep slings on! I teach and am on my feet a lot. I need shoes that are comfy but sturdy as I am often on the playground. Shoe shopping has ceased to be fun! But, I am learning to deal with it, as at least I can walk! I am on irriotecan and avastin now and fortunately have few new side affects! The oxy was a killer!(for my feet and hands, not the cancer!)
    Hope you get some relief soon! Jean

    yes, I blame it on the oxy.
    yes, I blame it on the oxy. I am almost jealous of those that get through this with no issues. I think how is that possible? My feet have recovered a bit- one of the most obvious things is I no longer walk with a strange gait, but I have this constant feeling of something stuck between my toes, more annoying than anything. I am also a teacher, but high school, so no playtime duty for me. Although I do have afternoon bus duty and picking up and moving the barrier is repetitive stress on my hands. I have found that low stress exercise (gentle, slow walking and no stairs- no swimming however, even lukewarm water and my feet and hands HURT), that this exercise or better put, movement helps. I am just tired of hurting, and to some extent, every single day I hurt.
  • Patteee
    Patteee Member Posts: 945
    lisa42 said:

    acupuncture
    Hi Pattee,

    I'm sorry to hear of all the pain you're having to deal with. Although my pain wasn't as extensive as yours sounds, I have definitely also dealt with pain- severe pain in my left foot and also joint pain in my ankle, knee, neck, lower spine, and sometimes shoulders. I have really gotten some great relief lately through acupuncture. I know it wouldn't address the damage already there if that's the case, but I really believe you could get some pain relief. In fact, as I read your post and went to reply, I actually thought "oh yeah, I've had joint pain too" because I've hardly had any pain lately. I was really skeptical of the acupuncture at first, but I am completely sold on it now! I'd definitely try it if I were you. If your cancer center doesn't offer it, there may be places near you that offer it for either free or at a discounted rate. My cancer center offers it for free for their patients, which is how I ended up trying it- I thought what did I have to lose since it was free. It works and I'm sold on it!

    Best wishes to you-
    Lisa

    thanks Lisa- actually this
    thanks Lisa- actually this is a direction I hope to get myself organized in this coming week. I have a friend (from my past, no contact in years) who not only does acupuncture he also has a homopathy (think that is what it is called) clinic in downtown Minneapolis. So, I have been thinking about it, just haven't moved on it yet :)
  • Patteee
    Patteee Member Posts: 945
    robinvan said:

    OUCH!
    Hi Pattee,

    I am so sorry to hear about your joint pain and afraid that I cannot offer any help from my experience.

    What I can see as extremely maddening is the condescending attitudes around "Oh Well, What do you expect!". Yes, some cancer treatments bring their own risks and side-effects, which may include other chronic medical problems. As a patient though you should still expect the best of compassionate and competant care and not be held "culpable" for your suffering.

    What would I do... I would find a place where they can take an effective inter-disciplinary approach. I don't know the landscape down there. Also... aren't there some effective pain meds in the meantime! I'm currently on a combination of morphine, Naproxin, Gabapentin, and Dexamethasone, for the bone and nerve pain related to cancer in my butt. Sounds heavy and I would want a long term dose, but I am in no pain and have most of my alertness and cognitive capacity. (though not driving!)

    "I just want to be pain free!" And what is wrong with that! Yes... keep pressing!

    Hoping for you... Rob; in Van

    As a patient though you
    As a patient though you should still expect the best of compassionate and competant care and not be held "culpable" for your suffering.

    Spot on Rob. Not a perfect analogy here, but will take a stab at it- the patient who smokes and gets lung cancer, or who is an alcoholic in liver failure? There is an undercurrent of, "well what did you expect?" As though if we are responsible for the outcomes of our actions, then we get what we deserve. Ah the sins of the father....
  • 2bhealed
    2bhealed Member Posts: 2,064
    Candida and allergy
    Hi Patteee!

    You asked for some input and here's mine:

    Yes, I would continue to seek advice from Mayo on the Western Diagnostic front BUT and that's a BIG BUT :-) I would seriously look into an anti-fungal and low allergy diet with extra digestive enzymes and probiotics to help with the arthritic issues. And here's why:

    Chemo kills EVERYTHING so one needs to reintroduce good bacteria into the gut lining. There are many out there (me being one) who believe that ALL disease starts in gut. Gut health is key and the chemo has done a number on you (and ron--which is a HUGE reason I didn't do it).

    Candida albicans can have a field day in your gut after drugs so killing them off with an anti-fungal diet could be helpful for you. This means no sugar, no fruit, no grains -- anything that feeds the yeast. The low allergy diet would be no wheat, no eggs, no dairy, no soy, no nightshades (notorious for promoting arthritis) such as potatoes, tomatoes, eggplant, peppers.

    You may want to keep a food journal and see how your body reacts after certain foods. Here's my experience of late....

    I get headaches from popcorn but not from cornbread. So when I went on a gluten free diet with my daughter recently I was eating a lot of cornbread for three days in a row. On the fourth I could barely get out of bed due to my muscles being sooooo sore and my joints were stiff and achy much like I figure arthritis feels like. My feet were so stiff and sore I hobbled around for a few minutes until I loosened up. My hands were stiff and puffy. I took the corn out of my diet and presto chango I was much better.

    I am experimenting with a low histamine/low allergy/anti-fungal diet myself after dealing with this Mast Cell Activation Disorder that my allergist at Mayo says I have. He did NOT put me on this diet, if fact he has said nothing about diet (oh surprise), but I am doing my own research on line about this issue. It is working really well so far and I'm not having allergic episodes as I work on healing my gut.

    It so happened that I started having serious allergic reactions after being on penicillin for a strep infection in my foot and my system went haywire. So I can imagine what a body has to deal with trying to heal from the chemo.

    Anyway, just some thoughts because I REALLY don't think you should "learn to live with it"!! I think that's a COP OUT on the part of the Western Medical profession. Please think about searching out a Naturopathic Doctor who WILL help you heal from your chemo problems and get your body back to balance.

    peace, emily

    ps. and juicing could really help too ;-)
  • lesvanb
    lesvanb Member Posts: 905
    pain
    I'm 5 months out from FOLFOX and still have Grade 1 neuropathy in tips of fingers and feet. I had osteoathritis before dx and the cancer treatment process has accelerated the aging process (one of my oncs agrees with me). I've had some improvement in function with my feet with less blocky numb feeling and now no balance issues. I still have pins and needles and can understand feeling like something is under your big toes (for me it's under my arch). What seems to be working is acupuncture 2 x/week. My insurance pays for it. I also work closely with my naturopath and get infrared treatments at physical therapy. Physical therapy, plus yoga and weight training with a trainer has also been very helpful in quality of movement. I still take 1/2 Vicodin at night to sleep because of pain/discomfort. I look forward to the neuropathy from the oxaliplatin being gone in the 6 months the drig companies said it would be.

    Leslie
  • 2bhealed
    2bhealed Member Posts: 2,064
    Patteee said:

    thanks Lisa- actually this
    thanks Lisa- actually this is a direction I hope to get myself organized in this coming week. I have a friend (from my past, no contact in years) who not only does acupuncture he also has a homopathy (think that is what it is called) clinic in downtown Minneapolis. So, I have been thinking about it, just haven't moved on it yet :)

    MPLS!?
    Either I totally forgot or I didn't know you were from MN. So, knowing this I can suggest two practitioners whom I used for my cancer healing protocol. My Naturopathic doctor is in St. Paul and my WONDERFUL!!! Traditional Chinese MEdicine practitioner is in Bloomington. She does acupuncture, massage, aromatherapy, herbs, supplements, you name it she's licensed for it. She was a nurse who just continued to get educated in alternatives. I just love her and give her a lot of credit for me still being alive after 8 years! Her treatments were like going to a spa and she was always researching cancer healing for me.

    If you're interested I can give you names and numbers.

    peace, emily who's a Cheesehead living in MN!
  • VickiCO
    VickiCO Member Posts: 917
    lisa42 said:

    acupuncture
    Hi Pattee,

    I'm sorry to hear of all the pain you're having to deal with. Although my pain wasn't as extensive as yours sounds, I have definitely also dealt with pain- severe pain in my left foot and also joint pain in my ankle, knee, neck, lower spine, and sometimes shoulders. I have really gotten some great relief lately through acupuncture. I know it wouldn't address the damage already there if that's the case, but I really believe you could get some pain relief. In fact, as I read your post and went to reply, I actually thought "oh yeah, I've had joint pain too" because I've hardly had any pain lately. I was really skeptical of the acupuncture at first, but I am completely sold on it now! I'd definitely try it if I were you. If your cancer center doesn't offer it, there may be places near you that offer it for either free or at a discounted rate. My cancer center offers it for free for their patients, which is how I ended up trying it- I thought what did I have to lose since it was free. It works and I'm sold on it!

    Best wishes to you-
    Lisa

    Pattee - acupuncture
    Pattee,

    Chemo and radiation through the hips have given me severe osteoarthritis. I am allergic to almost all anti-inflammatory drugs, so my oncologist sent me to acupuncture. In July & August I had to use a wheelchair if we went anywhere that involved walking. Now I can go up & down the stairs and walk about a mile (if I can get that far from the bathroom!) I no longer cry in my sleep because of the pain, etc. I'll admit that I was skeptical, but it surely has worked for me!

    As Lisa says, check your local cancer center first. They often have scholarships or discounts for this. I was fortunate to have an "Angel" who anonymously paid for 10 visits for me.

    Many hugs, Vicki
  • Nana b
    Nana b Member Posts: 3,030
    lesvanb said:

    pain
    I'm 5 months out from FOLFOX and still have Grade 1 neuropathy in tips of fingers and feet. I had osteoathritis before dx and the cancer treatment process has accelerated the aging process (one of my oncs agrees with me). I've had some improvement in function with my feet with less blocky numb feeling and now no balance issues. I still have pins and needles and can understand feeling like something is under your big toes (for me it's under my arch). What seems to be working is acupuncture 2 x/week. My insurance pays for it. I also work closely with my naturopath and get infrared treatments at physical therapy. Physical therapy, plus yoga and weight training with a trainer has also been very helpful in quality of movement. I still take 1/2 Vicodin at night to sleep because of pain/discomfort. I look forward to the neuropathy from the oxaliplatin being gone in the 6 months the drig companies said it would be.

    Leslie

    I have pain that I was attributing to Levaquin antibiotic
    Off of chemo going on 4 weeks now. For the past three weeks I have had major pains on my neck, shoulders, lower back, my glutis maximus(sp?), and the back of my legs. I have been on Tylenol, Tylenol PM, and Vicodin, hot showers, heat aids and nada, it still hurts. I am waiting to talk to my oncologist on 10/21 but it sounds like it may be what you all are describing.

    Great. I need a massage!
  • 2bhealed
    2bhealed Member Posts: 2,064
    VickiCO said:

    Pattee - acupuncture
    Pattee,

    Chemo and radiation through the hips have given me severe osteoarthritis. I am allergic to almost all anti-inflammatory drugs, so my oncologist sent me to acupuncture. In July & August I had to use a wheelchair if we went anywhere that involved walking. Now I can go up & down the stairs and walk about a mile (if I can get that far from the bathroom!) I no longer cry in my sleep because of the pain, etc. I'll admit that I was skeptical, but it surely has worked for me!

    As Lisa says, check your local cancer center first. They often have scholarships or discounts for this. I was fortunate to have an "Angel" who anonymously paid for 10 visits for me.

    Many hugs, Vicki

    So cool!
    Hi Vicki!

    That is so cool about your angel donating 10 visits. What a gift.