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 Life After Cancer
 painful joints
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jaimen Member |
posted 03-22-2004 02:20 PM
   
I am a Hodgkin's disease survivor. I finished a year of chemo, stem cell transplant and then radiation so of course i'm not shocked to discover that I have tons of aches and pains. But has anyone else experienced painful joints such as swollen hands and difficulty banding your joints? I am researching a lot about it now and consulted with a rheumotologist who prescribed anti-inflammatories which do little to help. I am thinking that I am suffering from lymphedema. Has anyone else experienced this? Thank you. IP: Logged |
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cjg Member |
posted 03-22-2004 02:28 PM
Hi Jaimen! I am also a HL survivor. I just finished my round of ABVD and rad's in Nov 03. I really don't have any joint problems except my hip may give way if I have been sitting awhile and I jump up. I do however still have swollen hands and that is driving me nuts! My doctor laughs that I am so concerned over not being able to wear my rings when I feel good and have my treatments behind me. He just tells me it will take time. So.. I guess I have nothing but time. My feet don't seem to swell anymore so maybe my hands will be next. Keep me posted on what you find out because I hate the swollen hands...not only can I not wear my rings... they feel stiff! IP: Logged |
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mclinda Member |
posted 03-22-2004 04:45 PM
Hello all! I, too, am a HD survivor having finished treatment in Feb 03. I often have very painful joints including hips and knees.I wondered if it is the extra weight I have not been able to loose. Lately I have had on and off pain on my left side kind of under my ribs. Any insight on that? I see the onc in May. What kind of scans has anyone had since remission? Thanks...not a lot of HD chat so it always catches my eye. IP: Logged |
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cindymirza Member |
posted 03-25-2004 04:33 PM
Hi Jaimen, Cindy, and MClinda- I know there isn't alot on the HD, so I read it all too. I also have HD (diagnosed Sept 2003) and finished chemo on Feb 23rd of this year. I just had my first chest radiation today, as a matter of fact. Anyhoo, I have been feeling a "tightness" in my joints, not exactly a pain, since I ended chemo. My radiation onc. said that it could be from chemo. The tighness is strongest in my hands and knees, especially upon first waking up. Things loosen up after I workout at the gym. I don't know what to make of it, as before I was diagnosed woth HD, I was seeing a rheumatologist for arthritis, apparently caused by a strep infection untreated. As she was going to treat me with a long course of antibiotics, we discovered the cancer, and plans for that were put on hold. We think the HD weakened my immune system, and that's why I was getting alot of infections, and hence the viral arthritis. I don't see her again until May. As for scans, I had CT and PET scans done two weeks ago, and the PET scan looked normal. The CT showed only residual scarring, about 1cm or less where my mediastinal tumors were. In a normal person, she said they wouldn't have even pointed it out, but they did given my history. My onc. said that scar tissue is normal after having nodular sclosing HD. IP: Logged |
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Zenzero Member |
posted 03-30-2004 12:07 AM
I am a NHL survivor and have the same joint/swelling problems that a few of you have mentioned. My Oncologist insists that it isn't from any treatment I've received or am receiving (Rituxan, ongoing). My ankles and legs have gotten much better, but I'm still having problems with my right hand and fingers. Thankfully, the tingling feeling has subsided. Mclinda, I too have the feeling under my left ribs...right where a bra would go. It makes me worry, although nothing has shown up on my scans. If anyone has any insight regarding this subject, I'd love to hear about it. G [This message has been edited by Zenzero (edited 03-30-2004).] IP: Logged |
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cjg Member |
posted 03-30-2004 10:40 AM
Hi Zenaero! My doctor compared the chemo to a bomb going off in my body. He said it takes time to rebuild after a bomb. My body will take time to rebuild after the chemo. Made since to me... IP: Logged |
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sawnoie Member |
posted 04-03-2004 03:00 PM
Hi all, I am so glad that I checked in today. I had late stage three Nodular Sclerosing Hodgkins in 1982. Thankfully, I am still here. I have terrible joint pain and thought I was the only one. My hands and wrists swell and hurt and sometimes my feet, but I have pain in any joint that I may have had an injury in at any point in my life. I never have gotten any kind of explanation. I had MOPP sandwiched with Radiation to head/chest and then lower abdomen. Well, I am sorry y'all suffer with pain too, but I am glad to hear that I am not the only one, and I am not a crazy. Most of the time excercise helps with the stiffness and pain...sometimes not. I too find little relief from NSAID's or OTC stuff. Thanks for the info. I appreciate it so much. Sue IP: Logged |
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jaimen Member |
posted 04-11-2004 01:14 PM
Hi, I am so sorry you too are in pain. i still have a lot of joint pain, especially in my hands upon waking but also all of my other joints especially if I have sat, laid down for a while. I went to a rheumotologist, talked to my oncologists, etc and no one has much to say about this. I took several types of anti inflammatories (but only the vioxx helped a little). Now i'm trying acupuncture and some amino acids (glutomide). They aren't better really but I am able to get my rings off with much less of a struggle. this is a real problem and it's too bad that there isn't more information out there about this. I think a lot of us realize that we aren't going to walk away from treatment scot free and tend to poo poo our aches/pains. But they're real, they're there and we should talk about it. One thing my acupuncturist advised was to use warm and cold wash clothes alternating to alleviate the pain in my hands. It does help. IP: Logged |
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sawnoie Member |
posted 04-11-2004 07:00 PM
I think I had to give up rings about 9 years ago. I have trouble with my watch sometimes too. Have to wear it very loose. I have had some relief with acupunture, but not in my hands. The only help I get in my hands is cortisone, which I hate to have, so I wait until I can't work to get a shot. I had thought that maybe it had to do with having the chemo administered through the hands, but I think nowadays they use a porta cath or something similar. There goes that theory. Anyaway, thanks for you kind response. I usually lurk on the BBS but felt compelled to write this time. So thanks for the response. All best, S IP: Logged |
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JuneRose Member |
posted 04-12-2004 07:24 AM
Hi Mclinda and Zenzero, I haven't started treatment yet (I'm on wait and watch with CLL) but I also have pain on my left side, sort of under the ribs and sometimes on both sides. I tried to explain the pain to my doctor, but he didn't have anything to offer as to what it might be. (I believe that the spleen is located on your left side, just under the ribs. Mine is not swollen according to 2 doctors.) I was hoping that that pain and the joint pain would subside after treatment. I guess I shouldn't get my hopes up. I hope you all find relief from your pain. IP: Logged |
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Zenzero Member |
posted 04-13-2004 11:20 PM
Do any of the professionals here read these posts? Again, I read of the problems with under the rib discomfort, wrist problems, and joint pain, without any good response. Anyone?
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JuneRose Member |
posted 04-14-2004 04:21 PM
Hi Zenzero, If professionals read posts on this bulletin board, they are not allowed to offer their diagnosis or opinion. The following are on the Society's list of possible symtoms of blood cancer: • Unexplained back or bone pain. • Pain in joints or bones. If pain becomes too much to handle, then the best resource is your doctor. If he/she says it's not related to your condition, see another doctor. In this day and age no one should have to live with pain. I hope all of you find the solution you need for the pain. I myself look forward to relief. IP: Logged |
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jaimen Member |
posted 04-21-2004 08:48 AM
I have to say, this is so helpful. Just even hearing that others are suffering with the joint pains makes me feel a little less crazy. My oncologists say they don't know anything about it, other people don't have it but I think with all of us survivors, we get used to the fact that our bodies can be uncomfortable and we have so many aches/pains that can't be explained. I have been doing acupuncture. It doesn't seem to really help the pain in my hands but I do get something out of it. Maybe it will cumulatively help me and you out there. Something that does help if it's acute is alternating soaking your hands in warm/cold. I use washclothes and that seems to help a bit. IP: Logged |
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sawnoie Member |
posted 04-22-2004 09:12 AM
Deems like a lot of us have pain in the hands, does anyone have problems with their feet too? I find that the temperature affects how both my hands and feet feel. One doc said I may have developed Raynaud's syndrome (oh, goody a name for it). My feet become very uncomfortable in the cold, but when I wear socks and they get too warm then they blister it's strange. Anyone else? S IP: Logged |
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lisarunyon Member |
posted 04-22-2004 09:24 AM
It is funny you mention this because they said this is what my daughter has in her hands. She is 13. Her hands turn white and then dark purple when they get cold and feel tingly. She plays flute in the band and if she is cold, she can't feel to play. They said it could have been caused by the vincristine. IP: Logged |
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sawnoie Member |
posted 04-22-2004 09:50 AM
Yes, I get white and then purple too, sometimes my fingernails are very purple. I don't play the flute, but I use my hands for my work, and it can be problematic. I have some very thin microfiber gloves I use for running and I cut the fingertips off to use for work, maybe this could help your daughter. The gloves are thin enough not to be cumbersome for movement. I did not have vincristine, I had MOPP and radiation treatments, so no similarity there. Sometimes I wonder if the Docs. are so busy with treatment and keeping us alive that they really don't know as much about the effects and life after the struggle. Best of luck to your daughter, my thoughts are with you both. S IP: Logged |
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cjg Member |
posted 04-22-2004 12:14 PM
Hi Sawnoie! I think you are correct in stating the doctors are so involved with the treatment that they don’t know that much about the side- effects and life after! Do you find that sometimes you don’t know what doctor to call anymore? Is this a symptom for the oncologist or the GP??? What a mess. Funny how I have heard that “This shouldn’t happen…so I get sent to the GP only to end right back at the oncologist! Thank goodness there is a treatment for cancer because the alternative stinks, however it would be nice if some of the side effects where not so awful. Thank goodness the hand and feet problem is minor compared to what some of our side effects could be! To everyone with the stiff, sore and swollen hands/feet, take care and keep sending suggestions. I think we are our best bet! IP: Logged |
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lisarunyon Member |
posted 04-22-2004 12:58 PM
I agree about the doctors too because my daughter is 2 years post treatment and we were just given an answer to her hands problem 2 months ago. Sometimes I feel stupid asking so many questions but as a parent I feel I have to. We have had her feet checked as well because she has gotten very "clumsy" since chemo. She tends to have more tumbles down the stairs or she will trip when she is walking. They say there is nothing wrong. She just laughs it off and says she is tripping over air again. IP: Logged |
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sawnoie Member |
posted 04-22-2004 01:51 PM
Regarding which Dr. to go see, I gave up. Sometimes I just live with stuff. I was treated 20 years ago, so although it's amazing to me that I am still alive, my primary onc. retired ( I'll never forgive him, kidding) Now, I just feel like a hypochrondriac, although I felt that way when I was having treatment too. hehe. Had a touch of cancer. Lisa, tell your daughter I fall down all the time. I am a runner and just about once a month I trip on air too. Funny she says the same thing. Your daughter sounds like an extraordinary young woman. s IP: Logged |
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pcheikes Member |
posted 05-02-2004 03:38 PM
I haven't seen many posters indicate they have CML and experience joint pain. Are there any, besides me? My joint pain is really a flu-like achiness (in the morning, that subsides later in the day). Currently, my PCP is treating it with thyroid medication (because my thyroid levels have been low), but it hasn't helped the achiness. I'd appreciate any suggestions for other treatment ideas. I'm currently on 400 mg Gleevec, 10 mg Prednisone, among other things for my Crohn's Disease (anti-inflamatory). I recently (April 1, no foolin!) had the pleasure of a consultation with Dr. Brian Druker, OHSU, in Portland regarding my CML treatment venue and he didn't have any treatment suggestions for the achiness, either (nor has my oncologist at the U of Minnesota). IP: Logged |
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sawnoie Member |
posted 05-08-2004 09:33 AM
pcheikes I don't know if this could be the answer for you, but when I was taking Prednisone for treatment, I had flu like symptoms in the mornings. The other thing that comes to mind, and forgive me, I don't know if you are female, is hormones. Menopause can cause that type of feeling. One would think that the Docs might have mentioned this to you, so I may be off base, in which case please forgive me. Hope that may be a little helpful. Hope you are feeling better. S IP: Logged |
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cary Member |
posted 05-13-2004 03:58 PM
I just had my first treatment lastweek. I listen to my body pretty closely. I don't have the experience that many of you have but it seems that my joints are aching off and on. My next treatment is in 2 weeks. What does this mean? IP: Logged |
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dk Member |
posted 05-18-2004 08:31 AM
This might be totally irrelevant, my wife is the Hodgkin's patient, not me, and I don't recall her complaining of joint pain. But, I've had joint aches for years, too much abuse to the knees from sports, and taking a glucosimine and chondroitin supplement has helped alot. Both exist in your body naturally, as a "joint lube", so I'm speculating that maybe the chemo is destroying some of this too? heck, it destroys everything else... -Dave IP: Logged |
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Possum Member |
posted 05-23-2004 07:53 AM
I haven't had chemo, only radiation, but I was wondering how many of you who are suffering the pain and swelling in joints and hands etc had had prednesilone or prednesone as part of your treatment. I was on Prednisolone for asthma for around three months. For a while after I stopped taking it I found that I had extremely achy joints and edema ( fluid ) in my lwer legs and lower arms. I have not taken it as a course for over three years now and the symptoms have gone. I find that if I take it now though I end up bedridden. Just thought this might help. IP: Logged |
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Hani Member |
posted 05-25-2004 02:29 AM
quote: Hi Dave I just want to mention MSM Powder to you. Iam an artist and my fingers get stiff and swollen. I took the powder (made from the stuff we find in our ear cartlidges) for 3 months and my pain is 90% gone. It might help. Whether my jointpain had anything to do with my NHL is a big question. Maybe just too hard work. Hani IP: Logged |
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jaimen Member |
posted 05-27-2004 10:31 AM
i hope this helps you all... since I posted this originally I have seen an acupuncturist for about 2 months. She put me on an amino acid glutomide and I took it for a month daily (25 mg i believe). I also started eating mainly organically and my swelling and pain in my hands is practically gone! I can wear my rings. they come on and off now and I wake up without pain. I hope this helps some of you! IP: Logged |
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jessiesgyrl Member |
posted 06-10-2004 09:23 PM
Hi, I am a new member and was browsing this website when the topic: painful joints caught my eye. I am 47 years old and have had six treatments of CHOP in 2001 for NHL. I too have swollen and stiff hands and unbelievable joint paint, particularly in my knuckles. My fingers have large knots on them especially the first joint below your fingernail. They are not getting any better, but contine to worsen. I too saw a Rheumatologist, but she was like, yep you have arthritis, live with it. The pain is unbearable at times. I have had every kind of anti-inflammatory on the market to no avail. I guess there is not much that can be done. I am greatful I remain cancer free today. Living with these painful and stiff joints is frustrating enough. If you find some information that you feel may be helpful or linked in some way, please let me know. Thanks so much. quote: IP: Logged |
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Hani Member |
posted 06-17-2004 12:44 AM
Hi there, You first need to find out if you have Osteo arthritis or reumatoid arthritis. MSM does not work for reumatoid. I went to see a doctor in LA who did a lot of research on glucosamine and msm. I wanted to get msm for my brother who has reumatoid, but the doctor told me it will not work on him. All the best to you. Hani IP: Logged |
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rita Member |
posted 06-19-2004 04:35 AM
This is my first time posting. I am a HLD survivor. I finished chemo 8/26/03 and radiation 10/03, I feel all the aches and pains all of you feel, but not until 3 months later. I really thought I was going crazy and I think my doctor thinks I am a hypochondriac. I am not as worried as he thinks but I feel guilty asking him so many questions compared to his other patients. I thought my fingers and hands were swollen because I gained weight from the chemo with steroids. But all these cancer pains I've read are common. I have not read anyone experiencing Lhermitte's sign. Lhermitte's sign is the side affect of radiation. If I walk for more than 5 minutes, or stand for long periods of time I experience an electric shock shoot from my neck to my feet. It does not hurt, just very uncomfortable. My doc said that it isn't permanent but I'm beginning to accept all the aches and pains as something I have to live with for the rest of my life. At first I thought I needed to see a neurologist but then the dr. said that it was normal. I am still waiting to get my life back to normal. IP: Logged |
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AmyLundy Member |
posted 06-29-2004 08:56 AM
I am a NHL & ALL survivor. I had my stem cell treatment October 3 and I had joint pain in the hips, knees and ankles right away. That subsided and my neurologist is convinced it was steroidal myopathy. I was taking steroids to clear up some GVHD skin stuff. After I got home from transplant, I began working on my balance, strength and energy level. When I was strong enough to stand on my fee for more than 5 minutes without hurting, I joined a gym. The next day, I started having pain in both hands and fingers, and my ankles. It is really bad in the morning when I haven't moved much during the night. I have to slowly wiggle finges to get them to move and walk slowly and methodically until it doesn't hurt. I have to wear shoes at all times or my feet hurt. My neurologist said it is my chronic neuropathy due to all of the chemo I've had. There are certain drugs in chemo protocol that cause neuropathy. Some is reversable, some are not. I take neurontin and it has made a difference. I walk in the evening when the sun goes down and when I finish I am tingly all over. The neurontin has helped with that too. For the hands. I do tendon glides. My occupational therapist at MD Anderson suggested them when I called complaining. He said IT IS COMMON IN TRANSPLANT PATIENTS To have joint pain. Anyhow, you stretch your palm open, like you are doing the "queens wave". Slowly curl your finger tips down to the pads of your hand. Stretch your hand open again, then slowly curl fingers and make a fist. Stretch hand open again and then take tips of fingers and touch the pads of you thumb, close to the wrist. I helps me. I do it throughout the day when the joints hurt and get stiff. The swelling comes and goes. I take a lasix when feet and hands swell and it has helped. Hope things are well with you...Amy IP: Logged |
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Lori Member |
posted 07-27-2004 06:58 PM
I just had a stem cell transplant for Non-Hodgkins Mediastinal B cell lymphoma back in February. I was on prednisone for about 8 months during treatment. I have had excruiting muscle and joint pain ever since, although I do not have swelling at this point. The oncologist says I had this pain BEFORE treatment, but that I have forgotten about it after being on prednisone for so long. Believe me, I did NOT have this kind of pain before treatment. My family doctor says it is from prednisone toxicity, as prednisone weakens tendons, destroys cartlidge, and also causes osteoporosis. I notice the severest pain in my knees when going down stairs, and also it feels like my hips are coming out of joint when I go upstairs, and I have to swing my legs out funny to go upstairs. Anyhow, we are waiting for the results of a bone density scan before proceeding with physical therapy. She is very concerned that I will start blowing out tendons while chasing my 3 year old, in the meantime. My point is that you are not alone - this seems to be a common side affect of treatment!!! I know that my one doctor at Johns Hopkins told me they had just finished a clinical study there, and that glucosamine chondroiten DOES help with joint pain and the rebuilding of cartledge, but that one must be sure to spend some $$ and buy a good quality product. He said the Hopkins studies showed the "cheap stuff" doesn't work. Dr. Andrew Weil says that ginger capsules act as a natural anti-inflammatory, and can sometimes work as well as an NSAID, with additional benefits to your stomach. I have found that ginger helps, but that I have to take a capsule like, every 3 hours or so. I get so tired of taking them that sometimes I just pop an Aleeve and leave it at that.
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Barbara Member |
posted 07-29-2004 03:11 AM
Good evening all, I am in remission for 2 and a half years now. (CLL/SLL treated at stage IV with flurdarabine and Rituxin followed with the maintance Rituxin protocol). I had joint pain and stiffness for about 2 years after treatment. It gradually lessoned over time and is minimal at this point. However I have some autoimmune problems or prednisone related problems at this time. Since last Sept I have had pain which has "settled" in the tissue from my ankle to my calfs on both legs. I have swelling which makes my lower legs very tight and hard. When the swelling decreases at times I have the same severe tenderness to touch and some bumps. I also have some discoloration in the skin that makes me look like I am wearing socks. Sounds weird huh? I was on 60 mg of prednisone since october due to sudden sensory hearing loss which was determined to be an autoimmune mediated response. At this time I am on 8 mg of Prednisone as I taper off (thank goodness.) The hearing begins to decrease when I hit about 10mg which is going on right now again unfortunately, but I just have to get off this poison. I also have been taking IVIG since my gamma globulin G, A and M are so low. The Gamma G went up and I was taken off it, but now is lower again so I will begin the infusions again tomorrow. Insidently, it seems my legs have worsed since my levels have decreased again. Long story...sorry. I really dont have much joint pain anymore, some stiffness in the morning and when I stand up. Probably not the place to post this delemma, but any ideas or input? I am so thankful to be here, just wish this stuff would subside already! Barbara IP: Logged |
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CHANCE Member |
posted 07-29-2004 01:41 PM
Hi my husband Chance 39yrs old was diagnosed with CML June 27th he has been on Gleevec for 3 weeks now and his joint pain and muscle pain is so severe that he is taking pain meds every four hours and using icy hot. this is one of the side effects of gleevec among others. He will see his Dr. Tuesday and we hope to get an answer as too how long he will have these symptoms. We thank God his count has dropped and he can walk again. quote: IP: Logged |
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debraellen Member |
posted 07-29-2004 04:31 PM
Hello Everyone~ I wanted to comment on what Sawnoie mentioned. I too was wondering if the pain was caused from the injection of the chemo. My wrists really hurts. Sometimes more than others. NEVER had this pain before cancer. I asked my onc about the theory of injections and wrist pain. He didn't think it was related. So-Sawnoie, you're not the only one who's wondered about the IV in hand receiving chemo. During chemo and a few months after, when I was working on payroll(wrote checks out by hand)-my fingers and hand would go numb. Fingers would swell too. All this in addition to the pain in my wrists. Swelling and numbness went away after time. However, just yesterday I was typing at work. My hands swelled up and felt tingly. Haven't had that experience in months. My next appointment is in Sept. If it continues, I will call before then. I wanted to say Hi to Lori in particular. Lori, I've been conversing with Diane thru these boards. She mentioned that she met a "Lori" who shares our cancer-NHL, mediastinal large B cell lymphoma. I am happy to have read that you are in remission. So am I. 6 months for me. Next set of scans are in Sept. Good luck to you. Best Wishes to All, IP: Logged |
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drmr Member |
posted 08-08-2004 12:19 PM
Hello, everyone. I am a 41 yr old HL stage 2 survivor, finished chemo and rad in clinical trial at Stanford in November. So glad to be alive, I assume these are all the little inconveniences post treatment... but still, it's really wonderful to hear from others that there's a "club" like this. Hand tightness- I've been wondering, too, as I have had tightness, stiffness, tingling, pain and sensitivity. Also, my hips still hurt, and my joints and muscles feel really old no matter what. I just push through it, and don't take anything... but some of your comments on diet/supplements, etc, may be helpful - thanks! Hands are worst in the morning, but also when typing, playing golf, etc. GOOD LUCK and God's blessings to you all. Dana IP: Logged |
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