Before my diagnosis of FNHL, I was experiencing muscle wasting, pain in my muscles and joints. At first I thought I had ALS (Lou Geherigs disease). It started with muscle twitching and pain. Long story short, lots of testing, lots of Dr.s and all they could come up with was chronic myopathy. Thank goodness it wasnt ALS. That was about 5 yeas ago, it subsided a little but now the pain has increased so much. Just curious if anyone with FNHL has ever noticed symptoms like this. I dont know if the stress of the cancer diagnosis has aggrevated whatever I had or is this all connected.
Just a wilda$$ guess here but I'd say there's a good chance it's related to all the stress you've been under and not the cancer. But then my diagnosis is worth just about what one pays for it. LOL I've heard of several, and expereinced myself, pain in muscles, joints, and bones during and after chemo along with neuropathy to varying degrees but not before.
Hope you can find some relief. For me, the chemo induced pain has been helped dramatically by acupuncture. Along with chronic, non-chemo, pain I'd suffered with for years in my back and hip. 99% pain free for the first time in years. Rarely get even a headache anymore.
I have peripheral neuropathy caused from 8 R-Chop treatments. My legs/feet/hand/forearms all are effected to varying degrees. My feet burn and hurt almost constantly. My knees and lower leg bones hurt. My hands can't stand anything cold. The symptoms are the same as diabetics and people who have been poisoned. Basically the way I understand it is the poison that saved my life affected my nerve ending. Which causes all the pain. Look up peripheral neuropathy I think you will find it an eye opener. I take lortabs and morphine which help but in no way is back to normal. I am in so much pain that someday's I wish I would never have had R-Chop. One other side effect is that if I sit at the computer more than a few minutes my feet start to hurt, so I wish you good luck.
Hi Don and Stella,
I've just remembered that I read where Alpha Lipoic Acid helps with neuropathy. I took some for a while and think I'll start again since I have this burning sensation on the top of my left foot and ankle. It feels like it was sunburned and hot running water is pouring on it. However, you should probably check with your doctor before taking anything of this sort. There are many articles on the net about its effectiveness with regard to diabetic neuropathy and some mention chemo induced neuropathy.
I hope this gives you yet something else to look into that may help.
My husband has FNHL stage 4 and several years ago had severe bone pain with 1st rituxan infusion requiring morphine. The pain has never gone away and has been worked up for everything known to man. Dr's had never seen this before. All negative test results. Has tried multiple neuropathy and pain meds. Only thing that works for him is narcotics. No signs of NHL since tx so would do it again. Attribute pain to rituxan. Put this same question out after his 1st tx and had over 5,000 hits with same symptoms. Many people out there with pain post rituxan but statistically insignificant due to millions receiving this. We reported this to Genetec and FDA. Maybe some day they will have enough patients reporting and a protocol for treatment of resulting pain. In the mean time know you are not alone. Hang in there to all!!!!!
I finished my last round of r-chop on 7/15/2010 and have experienced muscle, joint and bone pain since the second round. I saw an accupuncturist after the second round and it did knock the pain down a peg or two. (i cannot afford $150 each visit) I do not believe it is anxiety related.. my pain is chronic. (I was relieved to have found something wrong as I had been to several drs over the past three years and my reg dr refused to give me a physical only to find I was stage 3-4B NHL with a mo - 1yr to live -- my ten yr old daughter would not have been pleased). I too experienced prior muscle wasting and twitching (also referred to as neuropathy) before being diagnosed with FNHL and also the aggresive NHL. It was believed I had MS but the onc does not think so.. I have been experimenting with diff solutions. I have bought potassium tablets (took them for a week) and found that pedialite helps with the muscle pain. Have been fortunate to speak with a gentleman at the horse barn I frequent whom is a paraplegic (hard to complain about pain around him as he still plays polo). He first advised meds and when I told him the meds make me sick.. he recommended exercises.. very slowly and every day. I have three exercises to start isolating my shoulders (my most painful joints second is the hips). I use 2 lb weights and then move up to 4 lbs. After just 2-3 days it did help with pain, though I have fallen off exercising last 3 days as I was sending my eldest daughter off to college. Searching the internet I found a few references advising exercising to alleviate pain. My doc's asst also told me to 'free weight' but I couldn't move arms over my head without extreme stabbing pain.. your thumb must be keep straight out on weight whereas I was 'grasping" the weight. 10 reps each side. I am also advised (by the gentleman) to horseback ride just 15 min each day and build up my tolerance. PLEASE share any thoughts or info u might have to help us and others alleviate this side effect. There seems to be relatively only a few of us suffering this side effect but it is real.. I'm trying to figure out if it is the rituxan?
wishing you a pleasant day - Katherine
I too have had bizarre symptoms like yours along with a diagnosis of fNHL (Stage IV Grade 1) with some involvement in the bone marrow.
Last year I was on short-term disability due to muscle twitching, seizure-like episodes, lost control of my right foot, and reduced ability to speak. (stuttering, trouble word finding, difficulty forming words) After seeing multiple specialists in town with no diagnosis, I went to the Mayo Clinic. After extensive testing and waiting a month to get the results back, I got the official word from the Mayo doctors: "We don't know." I can't tell you how devastating it was to hear that.
Late last year, the symptoms began to resolve after some medication changes, although i still have muscle twitches and stutter occasionally. In Jan of this year i was diagnosed with the NHL. I was put on Watch and Wait because, according to my oncologist, i had no symptoms related to the NHL. I knew that there had to be some connection wtih my NHL and the symptoms that disabled me. So, i poured through all the medical records from all the doctors i had seen in 2009. Every test they had run had normal results, except one. An obscure blood test was slightly elevated with an asterisk and a note saying that this elevation was due to an "organ-specific, neurologic, autoimmune paraneoplastic syndrome." Translation: my body was over reacting to cancer and attacking my nervous system!!!!!
I have had two rounds of Rituxan since then and doing maintainence Rituxan now. One more dose this Friday and then i get six months off. In the past few weeks i have developed severe bone pain in my ribs and pelvis. I wound up in the ER for pain management and am now taking Vicodin every six hours to control the pain. The oncologist says it is not the Rituxan or the NHL causing the bone pain and that it must be my fibromyalgia. My rheumatologist says that it is not the fibromyalgia causing the pain. I don't think it is the fibro either. I am familiar wtih the muscle and joint aches of the fibro as i have had it for about 10 years. This bone pain feels different and doesnt respond to interventions that help the fibro. I have an appointment in a few weeks for a pain specialist. I just hope the pain goes away after i finish this round of Rituxan. I hate taking pain meds and would rather fix the problem that treat the symptom.
This is the first time that i have posted my full story on these boards. Partly because it is so long and partly because it is so painful to even think about. Anyway, i feel your pain, literally. It may not help much, but is nice to lean on others and to comisserate. Wishing you all the best.
Thank you so much for sharing your story. Before being dianosed with FNHL this year, for the past 5 years had been trying to find out why I have muscle wasting,twitching and feeling like I have bone pain. Like you went to multiple neuromuscular disease specialists, including the mayo clinic. No one could find anything wrong. I went to a rhumatoid dr. and he did tell me I had fybromialgia also but didnt explain the muscle wasting just the pain I was experiencing. So he said that I had other things going on but could only help with fibro. Past history: My reg. GP years ago had found that my IGG levels were always low and sent me to a hematologist to check it out and I was followed for years with that and was told as long as I didnt have any chronic infections that there was nothing to do. I was never sick, like with colds or flu's so all the dr.'s said that my low IGG numbers may have been normal for me. So here I am now, pain, muscle wasting, fibro, and NHL. When you mentioned about your immune system attacking your body it struck a nerve for me. How are they missing things. It is so frustrating.
I have stage one low grade FNHL. Removed a node in my groin and had 4 weeks radiation in that area. In the meantime I am wearing wrists supports because the bones in my wrists have collapsed or something, could this be related also. Severe pain in the wrists, thought it was tendonitis until xrays were done and I was told it is 'scapholunate advanced collapse' which I'm told usually happens with traumatic wrist injuries, which I did not have. So now I feel like I am losing the use of my wrists. It is tollerable with the supports on but have to wear them 24/7 except in the shower.
So here we are, mysteries.
I want DR. HOUSE (ever see that TV show??)
Sorry this is so long but one ques.
Did the Dr.'s decide to put you on Rituxan because of that blood test? Because you said that they were originally going to do a wait and watch. I am now on watch.
Thanks again, Stella
Like you, I've had a lot of joint/muscle issues the past several years, and along the way of trying to figure out what was going on I was dx'd w/fnhl in June '05. I've gone to several drs., along with 2 rheumatologists, and am now going to an orthopedic. Was told by the last rheum that I had osteoarthritis or possibly an autoimmune disease called ankylosing spondylitis (both degenerative disorders). He wanted to just put me on meds, but I wanted to know what was actually the cause of it all.
I had an MRI on my elbow this week and the report stated I have mild arthritis, lateral epicondylitis (tennis elbow), bone marrow edema, and a possible lipoma (which is what we were trying to dx - a lump in my elbow). Go figure, I'm a pretty inactive person, given my joint and muscle issues, so I'm not quite sure how I'd get tennis elbow nor where the bone marrow swelling would've come from - lol! I go for follow-up with the ortho tomorrow, so I'm curious what he has to say.
It's very frustrating, and at times over the past several years I have felt totally fine and wonderful, then next thing you know even typing causes me severe pain. Guess my point is, I know what you're dealing with. I will say, while I was on Rituxan my joints seemed much better. I'd had Rituxan in 8/05, then at minor relapse in 1/09 w/1 year maintenance through 1/10. My joints have just recently started really bothering me again. I may need to have my Onc put me back on the Rituxan, which luckily I could given the fnhl.
My 2nd rheumatologist said I possibly have ankylosing spondylitis. I have the genetic marker for it, but don't follow a typical pattern - it's in my cervical spine where I have degenerative disease. Also, I have 2 siblings that have been dx'd with it, and probably my father, though he's never been tested but has degenerative disc disease. My rheum and my onc disagreed that the Rituxan could have helped this as it affects B cells and the AS is a T cell thing (onc thinks it's possible). At any rate, most of the good drugs for it I cannot have because they can cause lymphoma. He put me on diclofenac which helped a little, but I quit taking it as I just dislike being on meds. My onc does not think any of my issues are lymphoma related. Who knows. I find it interesting my family is riddled with autoimmune diseases and I have a cancer of the immune system.
I've doing a little research on the web and I ran across this lecture on Youtube. It is very well presented for such a tough topic and I believe that it may be of help for you.
Let me know what you think! http://www.youtube.com/watch?v=Cq1t9WqOD-0
I began treatment with CVP+R in March 2009, had three rounds of that and then three extra rounds of Rituxan. After three months, my cancer became active again, and I began Treanda plus Rituxan for six rounds (two days each round). I finished treatment last month, and other than extreme fatigue was doing okay until pretty much exactly a month later, when I experienced extreme pain in my legs. This has now grown to pain starting in my buttocks, going all the way down to my feet. It is horrible. I am taking Fiorinal with Codeine with pretty much no relief, but I am allergic to most other pain meds. The only thing that seems to help is a warm bath. The pain is burning, throbbing, and feels like my bones are breaking. My doctor doesn't know what it is, other than saying it is probably a side effect of the chemo and will resolve in a couple of months. When I read these posts, I couldn't believe it - that others are having the same problems as I am. About three years ago, before I was diagnosed with NHL, I experienced a problem with my feet, also. It felt like I was walking on hot coals. No one could ever figure out what that was, but thank goodness that has resolved. After reading these posts, I am going to try acupuncture.
Hello, My name is Susan, and I am new to this post. I just completed my chemo treatments 2 months ago, and I am suffering from severe pain and cramping as well. I was first diagnosed with NHL in July 2005. At that time, it was only in my neck area, so I went through 8 treatments of Rituxin. It seemed to work well. I had very little side effects, and I had scans every three months. In Feb. 2010, my nightmare had come true again, but this time it was under my arms as well as in my groin area. I immediately started CHOP-R once every 3 weeks 6 treatments total. I experienced every side effect that you could possibly imagine, but my latest scans showed that I am in remission again!(Praise God) I was diagnosed with neuropathy after my 5th treatment. The doctor has prescribed me neurotin as well as percocet, Unfortunately, the meds only makes the pain tolerable. I am finding myself very frustrated because I beat the cancer again, but I feel like crap constantly. I am soo glad that I finally got on this site and read that I am not the only one that seems to be suffering. I feel like nobody in my family understands that I feel this way.
I just got out of the hospital after 4 days of excruciating pain. My CT and
MRI tests were all normal. On the last day, a pain management doctor came
in, and after putting me through a series of tests, he was able to finally
diagnose me. The condition is called chemo induced piriformis syndrome. He
prescribed 300 mg. of neurontin 3 times a day, valium, and morphine. This
is the first day I am not in pain. I am so grateful for an answer, and I
think you should check this out for yourself. I will probably have to go
for physical therapy, as my legs are still weak, but the pain is almost
gone. Good luck to you!
Thank you so much for sharing your diagnosis. They increased my neurotin to 600 mg 3 times a day, plus my percocet. Yesterday I was so dizzy that I fell and almost passed out! I go for my pet scan this Wednesday and see the doctor the following week for results, and I am definitely going to share what you told me. My biggest fear is that I am going to have to take narcotics for the rest of my life which I dont want to do, but without the percocet, I can hardly get out of bed because it feels like my bones are going to break! I was at the store the other day looking at clothes on a high rack and I my arms started to cramp up severly. My arms even cramp up if I am driving too long. I am so relieved that I am not going crazy and there is a diagnosis out there Thank you again
From what I understand you can take 12 neurontins a day, but you will
probably be asleep, as it causes tiredness. Maybe you are taking too much
Neurontin. I take 300 mg in the am, 300 mg in the afternoon, and 600mg at
night. That way I won't be so tired during the day. I'll bet your
dizziness is from too much Neurontin. Good luck!
Stella - I am new to this board and posted a message which I thought was in response to this, but who knows where it went. Like you I also experience the same symptoms. I started before my initial diagnosis of stage 4 nhl in 2004. After that time, and through much testing, I was diagnosed with polymyositis from a paraneoplastic syndrome (the nhl). The rituxan has helped stop the progression of the weakness. Right now though, my nhl is waxing and my muscles are worse than they ever have been. I do take pain meds so that I can function and I also get massages, which help at least the back. I have been on the rituxan since 2004 and was on an every 3 month cycle. Since December my onc upped the frequency since I also became anemic. That helped the anemia and the pain (it was very bad) but now I am anemic again and the muscles are bad. I go in Wed (finished 6 rounds of Rituxan - 6 weeks apart) to see if the close infusions of rituxan has helped. I hope that it will. For me it has been a good drug for my muscles and pain, except now. Ann
I just got out of the hospital because of the extreme pain that wasn't being
controlled by my meds at home. I saw a pain management doctor on the day I
was discharged, and he diagnosed me with chemo-induced piriformis syndrome.
After being on the meds he prescribed, I am finally starting to feel