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update on chemo induced arthritis

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Acupuncture and chinese herbs are not cutting into my joint pain. Unfortunately. I truly believe that my joints in my hands, mostly my thumbs, were bathed in chemotherapy, bringing on arthritis. I totally blame this on the chemicals.

I have been splinted, pump myself full of advil and chinese herbs every fricken day, cortisone injections in July (that lasted all of 2 weeks) and I am overcome most days with hand pain.

I also have neuropathy damage in my hands and feet. I have an "ulna nerve entrapment" at my left elbow- so in addition to neuropathy I have a double whammy of 2 outer fingers in my left hand are pin-prickly-painful.

I am reaching the end of my rope. Trying desperately to tie a knot to hang on, but my hands hurt too much to even try. I go from teary to full blown tears most of my waking hours- many things I do that everyone else can do with ease, brings on the waves of pain. Surprisingly, typing doesn't hurt. Everything else does. I would say this is a 4-5 out of a 10 pain scale- which in the grand scheme of life and living isn't bad. But this is chronic, day in and day out.

I see the hand surgeon tomorrow morning. I am going to ask for another set of xrays- I suspect the thumb joints have deteriorated even further since July. I already know the only direction I can go is cortisone injections- surgery has been mentioned, but can't do that yet. He has already said there is nothing he can do, cortisone or surgery is it.

I was always strong through 6 cancer related hospitalizations, 3 surgeries and 6 months of chemo. I did what I needed to do. Yes, I was the pillar of strength. And now I cry.
I survived the most horrific year of my life. And now I just need to survive what the treatments did to my body.

SandyL
Posts: 220
Joined: Feb 2009

So very interesting as my husband has been complaining of his shoulder aching. He finished his last treatment in June of this year. The pain is mostly in his shoulder but sometimes goes down his arm. I had no idea that chemo could bring this on. He refuses to
take anything for it cause he says it's not that bad yet (he hates taking pills, actually gags when he tries to swallow them), but he favors his left shoulder. Seems that cold brings on the pain. Maybe we should mention this to the onc. when we see him on the 24th.
Sandy

John23
Posts: 1832
Joined: Jan 2007

If you're taking the herbs to rid the pain, they won't work.

With TCM, the herbs are used to help balance the system,
and when your system is operating properly, it will cure the
cause of the pain. The pain will go away when the cause
of it is gone. All -that- takes time.

But your body is being flooding with toxic chemicals that are
overloading your liver and kidneys. The kidneys aren't too likely
to be doing their job well, and with poor kidney function comes
joint inflammation, and pain, infections, etc.

Isn't life sweet? The neat problem with it all, is that every blasted
drug you take, puts a burden on the organs that are most responsible
for clearing toxins out of your body - Liver and Kidney. Those
are the same organs that produce the chemicals that manage to
keep your system balanced... and keep anger, depression, pain, etc.,
under control. They have a hard time, and everything has a hard time.

And the more they give you to "fix it", the worse it gets...

Feel better now?

Since you already mentioned Chinese herbs, please let me suggest
that you locate a practitioner of Traditional Chinese Medicine?
Any ol' acupuncturist won't do. Well... let me rephrase that...
An acupuncturist can try to short-circuit the pain, and possibly
relieve some of the symptoms. It won't last but a day or two
before you'll need another few needles, but it can be some relief.

To do it the right way, you would have to be examined, and a
herbal prescription would be written to suit -your- body's needs.

Most all TCM practitioners work with Chemo patients, and have
remarkable results that usually exceed the expectations of oncologists.

Yeah, the stuff works; it oughta', it's a few thousands year old science.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

interesting post, thanks :)
yes, I am working out of the Alternative Medicine Clinic at Hennepin County Medical Center in Mpls. (hows that for a good plug) My acupuncturist, is also a practitioner of TCM. I am taking 2 different herbs- he says plan on being on them for a long long long time. Nothing is working on the pain. It is rather like telling someone who needs a knee replacement to just wait awhile. The only other drug I am taking is Advil- I have been off of chemo for 9 months. We are hopeful the herbs and acupuncture will help with the neuropathy- the joints however, not so hopeful.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi Patteee,

My heart goes out to you.

My TCM is in Bloomington and she works wonders with her massage along with the herbs and acupunture. Sounds like you need a major detoxing that could help your inflammation. She can really help on all fronts.

If you're interested I can give you her name and number. I know you're working with someone, but the hands-on bodywork that she does may really help with your pain.

peace, emily

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

yes, can you send me her name and number/ smithpatty@comcast.net
see, it is more than inflamation- I have almost no cushion of cartilage in my left thumb joint, including bone spurs around the joint. The right one is a bit better, but not by much. The rest of my hand joints I would say inflamation definitely- the thumb joints, it is bone on bone.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

That sounds so horrible. Sounds kinda like what my friend went through with rheumatoid (sp?)arthritis.

I'm sending you Lynn's #.

I truly hope you find some answers to help for your pain.

peace, emily

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Did you get my email?

John23
Posts: 1832
Joined: Jan 2007

Re:
"I am taking 2 different herbs"

That's a really small amount of herbs! Most TCM herbal formulas
are quite complex, and involve the use of quite a few numbers of herbs.
One of my mixes had 18 different herbs... My wife's RA mixes
ranged 5 to 20+ different herbs.

Single herbs can do very specific things, but they are usually used
with other herbs to "force the focus" on various organs.Single
herbs generally aren't used for something as complex as RA,
to fight cancer, or to counteract chemotherapy symptoms.

RA is usually related to what is called "wind damp" condition.
Herbal broths attempt to get the dampness out of the joints,
and calm the spirit. Sounds like hogwash, right?

It's amazing, but the description of the "cause" is so different
between the cultures (or sciences), but the cause of the symptoms
is exactly the same!

I can only offer the suggestion again, to seek a practitioner
of Traditional Chinese Medicine in your area.

My wife went to a few different "TCM doctors", who apparently
took some kind of crash course in "TCM". It was $$$ spent for nada.

It's difficult to find a good western medicine practitioner, and
it's no different locating a TCM doc. The difference can mean
the world tho, believe me!

"Traditional Chinese Medicine" Minneapolis

Good luck!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

seriously John, you don't need to treat me like a moron. This clinic I go to is very well known and connected with one of the largest metro hospitals in Minneapolis. I happen to know these practitioners, I worked as a psychotrimist on a large NIAAA grant with them over 15 years ago. Uli, is hardly a quack who got a fly by the night piece of paper. http://www.hfahealth.com/index.php?content=physicianInfo&sid=346 I have also lived and worked in NE China for several years and only got Chinese health care for various ills. I am seeking and working with a practitioner of chinese medicine!!! Do not treat me like a stupid person.

2 herbs- one is called shi quan da bu tang- it is a mixture of herbs that I put in hot water and drink like tea. The other one is boswellamine. So yes, I said TWO- the reality is I don't know how many herbs are in the first one as it is all in chinese.

John23
Posts: 1832
Joined: Jan 2007

Re:
"-you don't need to treat me like a moron.
-Do not treat me like a stupid person
-So yes, I said TWO- the reality is I don't know how many herbs
are in the first one as it is all in chinese."

Holy Carp, Matilda!

Hey gal, I didn't mean to insult you! There are so few individuals
that know anything at all about TCM, that it needs in-depth explaining
99% of the time. And I've found through past experience, that there
are many individuals that think the practitioner they're going to, is
actually practicing TCM, when all they're doing is feeding tea to
unsuspecting patients.

You would have to hear just how many individuals think that
ginger tea and store bought Yams are the main part of TCM, to
understand just how deep the misconception of TCM practice is.

So... now that you've filled in the missing blanks?

The -herbs- that you are taking isn't referred to as "two herbs",
but "two herbal prescriptions". That makes a whole world of
difference to anyone that knows anything about TCM! And for
those that do not, it helps explain the intricacy of the science.

The unfortunate thing, is that "shi quan da bu tang" isn't to be used
if the patient is "kidney yin deficient". And the symptoms as you
describe would point to that, unless other indications were not
present. It's a fairly common prescription that's being used
along with chemotherapy, to quell some of the side effects.....
And sometimes, in error.

You see, TCM is intricate, and there's been a lot of haste to get
this "new"concept into the marketplace. A wrong diagnosis can
have you taking a prescription that wouldn't do more than eating
an orange.

Please do not feel I think you are an "idiot" or someone that doesn't
know right from wrong. TCM is not like western medicine, it was
designed to be specific to the patient. Set formulas are adjusted;
herbs are added to, or subtracted from, the basic formula.

I would rather have you mad at me, and begin to question your doctor,
than continue down a blind alley without any guidance.

TCM can cure. BTDT with all but cancer (maybe), and I would love
to see others find their way to it. It's a viable option, but an experienced
doctor of Traditional Chinese Medicine is an absolute must.

And again, please do NOT be offended. It's tough to type things
exactly the way we intend then to be read.

Let me know if you need any info. I will be glad to do the best I can.

Good health!

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jun 2006

I have no idea whether these FIR (far infrared) gloves might help, but they look interesting and not too pricey: http://www.therapygloves.com/arthritishands.html

--Greg

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

thank you
they actually look somewhat like the braces I have now- I will think about getting them and let you know if they work. Just the idea that something like this might help, makes me cry. Silly woman. Thank you

PamPam2's picture
PamPam2
Posts: 375
Joined: Jan 2009

Hi Pattee
So sorry you are having such a bad time with the arthritis and the pain. Have your doctors had you try alternating cold and heat? This is one treatment they have been trying for rh arthritis and joint inflammation. I know it sounds weird, using ice, when heat seems to be so soothing, but it works. I hope you can get some relief soon.
And maybe with time, your body will detox more, and the neuropothy will lessen, it can take a very long time for nerves to regenerate.
Best hopes for you
Pam

jams67's picture
jams67
Posts: 927
Joined: May 2006

Pattee,
Exericise may not fix your problem, but it certainly does help. My hands feel better if I wear a brace overnight. I still don't like to write with a pen, but typing isn't as bad. My mother has severe osteo arthritis and by exercising, I hope mine doesn't get as bad as hers. She has 2 hip replacements and 2 knee replacements, a very courageous woman. When I work out, sometimes I'm dragging myself to the gym and hurting all over, but by the time I leave I feel better.
Jo Ann

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

ha- here I go and look for information on current problems and I find my old post. Same problems 3 years later.

I did have my left thumb joint redone Thanksgiving 09. It has taken awhile, but think I am recovered from it. I do have something going on currently in both hands, at the wrists and pain travels down the pinky. Not nerve isssue, he suspected 3 years ago one bone in my wrist was smaller- so need to explore PT on it.

And I see the hand surgeon tomorrow about the right thumb. I suspect it is as bad as the other one was- so will start with splinting and cortisone shots.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

read the date of your post. so glad to know that it was 09. at least one thumb is better. good luck with the other! hope the pain decreases or goes away

hugs
judy

ron50's picture
ron50
Posts: 1318
Joined: Nov 2001

I sympathise with you completley. I have lost feeling in my legs up to the knees.I have lost most of the feeling in my left hand tho it amazes me how much pain you can get from areas you can barely feel. I have severe psoriatic arthritis in both hands ,wrists and shoulders. Alkylysing spondylytis in my lower spine with sciatic pain. I dont walk now ,I shuffle.I have tried physio and dry needling,sulphasalazine,prednisone,methotrexate,endep,morphine patches,lyrica,arava,neurontin and now I take celebrex and panadol osteo. My rheumatologist wanted to put me on humira. I have had severe side effects from most everything I have been on so i refused humira. My nephrologist works in conjunction with the rheumatologist. He wanted me to try humira as well. My kidney function is not bad ,they are at about 60% unfortunately they leak protein badly . Last test I was up to 2.75 gramms a day ,baseline is .015 gramms. The celebrex helps with the pain but it is making the protein loss worse. I had a scan a couple of weeks back to find why I wake in panic at night unable to breathe. I was dxed with congestive heart failure ,the pulmonary oedema is stopping my lungs and heart doing their job. I have been put straight onto lasix ,it is a serious diuretic. It makes me feel like crap but at least I can breathe. I see my nephrologist in jan and i suspect he will give me an ultimatum ,either go on one of the high powered immuno-suppressants or face the consequences. So by jan I expect to be on cyclosporin,cyclophosphormide or imuran.
People think long term survival after cancer and cancer treatment is marvellous. It's not. Good luck Pattee I hope they can help you without causing you further grief ,Ron.

Sundanceh's picture
Sundanceh
Posts: 4339
Joined: Jun 2009

...then I read your post, Ron...

and I think I'll just keep quiet.

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