Advice for Better Living Archives

I have a very bad back where arthritis has set in and if that wasn't enough,I had a complete knee replacement a year ago. The surgery was a success I think - but a few months afterwards- I began to have leg cramps, unlike any leg cramps I have ever had. The pain hits my leg (the one with the knee replacement), and literally lifts my foot off the floor and at the same time, the pain is almost unbearable. It is hard to describe but the pain is very severe. Sometimes it hits regularly until my pain medicine takes effect. There are other times that the pain medicine does no good. I can't lie down on the bed, or in a recliner, and I have lost so much sleep, there are times I feel like a zombie. If anyone out there has had this problem and were able to solve it, please let me know what you did. The doctors, up to this point, seem as puzzled as me. I had a similar experience with severe back pain and muscle contracture down my leg, no knee replacement involved however. I had an MRI on my back which showed the damage to my spine and the subsequent nerve pressure that was controlling those muscles, etc., in my leg. I know I had one such contracture where I just screamed out loud and fell. I have had surgery on this area twice now and am relatively pain free although I too have developed arthritis in the lower spine and SI area. Maybe an MRI would be the next step to find out what might be causing this problem. My thoughts are with you and I hope you get relief soon. -Melanie I have had RA for 36 years now and just about any damage and or pain that it can bring, believe me when I say I know how you feel. The pain that you are describing does not sound like RA.Ask your DR. about a referral to a neurologist or neurosurgeon. Sounds like it could be a pinched nerve or pressure on the spinal column which could be a result from RA.I hope that I have helped at least a little.Keep in mind You Are Not Alone! Come to the chat room any time there is usually someone if not a bunch of really wonderful people there. Hope to see you there ............Arla AKA........Sixtysgirl Help! i am in such denial about the rheumatoid. when i hurt i think yes, i have it. when i am pretty much pain free i thinki dont have it. any suggestions on accepting this disease? P.S. i am a registered nurse, and i guess it is true nurses dont make good patients either. hi, I have much the same denial after 30 years, two knee replacements and 1 hip replacement. I have been fortunate with the replacements, but....I still cant believe it. Maybe I,m not smart enough to accept it? that could be, cause it keeps me going and going and going. I don,t think denial hurts really, we all want to appear normal, so I take care of my appearance and look the best I can for me and those around me. I don,t think they believe it either! What do you think? -Eileen Oh! Tough guestion! Can you help? Hi wasn't sure where i could write. am dragging and tired-just left my dad-he is dying in hosp. from cancer and emphysema- and my fibro and osteo, i feel so worn-maybe a line or two from others who have been here could help me. thank you, maggie Encouragement for Maggie Dear Maggie, Just to let you know I care. I felt so sad when I read you were feeling tired and that you had just left your Dad in hospital. My Mother was in hospital for three and a half weeks and just came out a couple of weeks ago, but still isn't one hundred percent and I worry so much. So I can't offer any advice or medical help, but if you need a friend or a bit of support I will be here for you- Margo I'm new to this site and so far am finding it quite helpful. My husband has Rheumatoid arthritis. Lately he's been having a lot of trouble sleeping at night. He has been having night sweats real bad and in the day time his shirts are drenched. Does anyone have a suggestion for me to pass on to him regarding this? Try Sleepy-Time tea. I also have RA and find that Benadryl caplets or liquid (for children)taken before bed time really helps me sleep, sorry however I cannot suggest anything for the nightsweats, I am usually cold. -Anne Sleeping and Sweats I have had total knee replacements on both of my knees and I'm trying to find knee pads to wear. I have short,fat legs and every place that I've looked all I find are to small, even the extra large are to small. I've lost several pounds and I work out at the gym 3 times a week, but I cannot find knee pads to use here at home to get down on my knees to do house work. Any suggestions you might have as to were I might find a pair, no matter the cost, would be appreciated. I've tried gardening knee pads, but they aren't thick enough. I await your suggestions. Thanks very much. I have seen knee pads in the Birkenstock Express catalog, don't know if it is on the internet. Web address is, www.BirkenstockExpress.com Hope this helps you. -B try a store that has soccer supplies. -CH Knee pad ideas? Has anyone had an allergic reaction to methotrexate? I recently was hospitalized from what I believe to be an overdose of the drug. I was hallucinating, had trouble breathing etc. I would like to hear anyone else's response to this drug. Have a methotrexate allergy? Please share your experience. i have been on methatraxte for several months. i first tried taking the pills but my liver could not handle the proper absorbsion so i had i go to weekly injections and have not had any absorbsion problems since. hope this helps you out. -DS About 3 years ago I started getting cortisone shots in the base of my thumbs, for arthritis of the basal joint in both hands. X-rays show that both joints are bone on bone. Then 2 summers ago I chipped a bone in my left thumb and things have progressed to the point where my hand is starting to get deformed and I will be needing surgery on my left hand sometime in the next couple months. Both of my thumbs hurt most the time - the cortisone injections will help for 6-7 months. I also take 600mg of Motrin 3 X daily. I'm looking for someone that has had this surgery - where the surgeon will take the broken ( in 4 pieces) bone out at the base of my thumb and reinforce it with a tendon from my forearm. I have read some material on the surgery but wanted some real experiences of what to expect. Before , during and after the surgery. Any basal joint surgery folks out there? I have had CMC joint arthroplasties with tendon transfers performed on both hands - I think this is the same surgery you are referring to. My right hand was done in January 1999 and the left in October 2001. I have never regretted having this surgery performed on either hand. Prior to the surgeries, my thumbs were so painful and pratically useless - I couldn't turn a key in the car ignition or button a button. With both procedures, the diseased CMC joint in my thumb was removed and replaced with a tendon harvested from my forearm. The surgeries are painful, but the right medication gets you through it, and then the dreadful pain is gone. I had a huge bandage on my hand for ten days, a drain that had to be removed after a couple of days. When the bandage came off, the stitches came out, and a cast went on immediately. The cast completely immoblizes your thumb and your wrist, but allows your other fingers to move freely. So you are basically a one-handed wonder until the cast comes off in six weeks. It doesn't take you long to realize your limitations with the cast, and to learn to use your opposite hand for everything. Dressing is a challenge - things have to fit over the cast. And you have to take a shower with a plastic bag over your hand. But as I said before, the relief from the pain was worth it. I did not go to physical therapy after the right hand was done, but did go after the left hand was done. Both hands are completely functional. If you have any questions, please don't hesitate to contact me! ~Joan (aka joanie baby) I'm not sure if this will help, but I did have a similar surgery several years ago. Long before I gave arthritis any thought. I had continual pain in my right thumb and come to find out, my thumb was dislocating everytime I moved it. I didn't have any broken bones in there as you have, but the surgery sounds the same and was referred to as "reconstruction of the cmc joint". They made 2 small incisions about 1/2" long across the inside of my forearm, split the long tendon length-wise, relocated my thumb to its correct position, drilled 4 holes through the reset joint and laced the tendon throught to hold it in place. They put a temporary pin in the joint above until everything healed. That thumb has just now started giving me trouble again, due to OA. If you want any more info, you can e-mail me at martha@arthritisinsight.com or martha@stanfoondos.com. Good luck Martha I HAVE SEVERE RA AND FIBROMYALGIA. I'VE BEEN ON ALMOST EVERY DRUG KNOWN TO MAN FOR THIS, AND STILL HAVE PAIN. I HAVE A RHUEMOTOLOGIST WHO DOESN'T BELIEVE IN PAIN MEDS. SHE SAYS WHEN YOU TREAT THE CAUSE, THE PAIN GOES AWAY. WELL HELLO!!!! AFTER 13 YEARS, I STILL HAVE PAIN, AND LOTS OF IT. WHAT SHOULD I DO? I'VE ALSO TRIED EVERY DIET, HERB AND SUPPLEMENT PEOPLE HAVE TOLD ME ABOUT. Hi, I was in the same boat as you--I have a rhuemy that doesn't feel comfortable prescribing heavy duty pain meds. I ended up talking to my G.P. who suggested a referral to a pain specialist. I went to the pain doc yesterday...he made sure that my rhuemy had no problems with him prescribing narcotics; and he got copies of my records as well. He ended up putting me on a low dose fentanyl patch We are now evaluating the pain over the next 3 weeks; and how well that patch works. I feel we have to be upfront and honest with all our doctors. Explain to the rhuemy that you are in real pain; and need to get some relief. Ask for a referral to a pain specialist. If the rhuemy won't give you one--call your G.P.. If that doesn't get you one, find another doctor. No one deserves to spend their life in excruciating pain. It's in the patients' bill of rights! -Dee The best medication for RA that I have found is Enbrel. You give yourself two injections a week. have been on it for three years, Its a miracle drug. I ave been pain free and I can do just about anything. Just like before I was diagnosed with RA. Why don't you give it a try. -Joanne The first thing you need to do is FIRE THAT DOCTOR! And find your self a doctor who is more enlightened that this fool. That doctor apparently got his or her training a century ago. That is no longer how pain is handled. Get another doctor. This one is a jerk. -Char I have RA and Fibro and about a month ago I developed Shingles and the doc I saw at the ER gave me Neurontin for the never pain and I have realized during this month that it is helping the Fibro pain alot during the day and at night too. It doesn't completely take it away but it sure helps a lot. I am allergic to a lot of pain meds because I am allergic to Codeine and most of them have Codeine in them. But tell your Rheumy that you can not function with the constant pain and need something for the pain until you get the disease under control...Actually they say people that have chronic pain (like we have with RA and the Fibro) do not get addicted to pain pills like others do. I can't remember where I heard that but it stands to reason to me. I hope you the best and hope I helped some..~Cheryl That's an easy one, switch docs! Find someone that will treat you like a partner in the treatment of YOUR disease! -RH You shouldnt suffer with RA Pain and please find another doctor to make sure you are getting the best care and get some pain relief -Mary Help handle the pain. I would like to know if anyone out there has fibromyalgia and what NON-cortisone medication helps. I have heard Neurontin is a good one for this condition, but am still waiting my doctor appointment to discuss this with him. Also, any other fibro patients out there who are injecting B12 or B complex? (it is not absorbed well in pill form in fibro folks). My fibro doctor also suspects I have systemic candidiasis, so I have cut way back on anything with sugar and/or yeast in it. That is truly a tough task for a sugar junkie such as myself, but I am really trying. Anyone else out there heard of this? I, too, have fibromyalgia and bless the day I started taking Neurontin. I also take Soma at night when the muscle spasms and restless legs go into overdrive. I take 300 mg of Neurontin about 1 hour before going to bed so that I will get some relief before I try to sleep. This has enabled me to get more quality sleep, which also has a positive effect on lessening my fibro symptoms. I also have a personal trainer who has fibro and manages to run her gym with only one other partner. She teaches proper nutrition for fibros along with great stretching and relaxation techniques in her fibromyalgia class (at Results Fitness in Monroe, CT). She is slowly adding to my exercise routine according to how I have been feeling......so additions if I am in a flare or am under extra stress that my cause a flare. I am finding that I am doing much better since I am eating properly and am exercising properly for ME. She understands what it is like to have fibromyalgia and that makes her the perfect personal trainer for us fibros. I highly recommend getting a personal trainer with a strong understanding of fibromyalgia and how carefully us fibros need to be with our nutrition and exercising. Keep moving, listening to your body (especially 24 hours after you have done something- for our usual delayed response) and look into the proper nutrition for fibromyalgia. It will give you some control back of your lives--and that alone is a natural high after feeling like we have no control at all. GOOD LUCK !! Jan asks: Are waterbeds good for people with RA? Why or why not? Hi there! I had a waterbed for a while and did not like it. Not only is it really hard to get out of, it bent me in all the wrong ways. It had no support at all for my joints. Hi, I don't like waterbeds myself because I can't get out of them. The water bed is not a hard surface. If you go to push off the bed with your wrists or elbows, the water bed gives and does not allow you to get a firm push to get up. Also, I like to sleep on a firm surface, it is more comfortable to me and gives my body more support. hi there. i am 21 years old, and was diagnosed with JRA at 18 months of age. i have a few handicaps, but am coping fairly well. i got married, and my husband and i are ready to start a family. do you know what the statistics are as far as passing JRA to your offspring? as far as i know there have been no other cases of JRA in my family, however we think my great grandparent may have had it and had just not been diagnosed with it. i am wanting so badly to start a family, but do not want my children to go through the pain i did. I say "GO FOR IT", nothing is life is guaranteed!! I have 2 kids and 2 grandbabies and so far so good, no ra with them yet...I know you don't want to pass it on, none of us do but think about it....What if your mom didn't have you because of RA...?? Just my opinion....with all the new stuff they are doing with genetics, theres a great chance that even if your babies ended up with ra science will have an answer by the time they would have to worry about it....Good Luck and Happy Motherhood!!! and Well, I am not a parent. But I have a bit of advice anyway. If your need is to be a parent, then maybe you can adopt. Being a parent has nothing to do with giving birth, and everything to do with love, and getting up in the middle of night to care for a sick child, and building memories, and playing Santa, and the Easter bunny, and the Tooth Fairy. And walking the floor with a colicy baby. And crying with your baby who has an earache. and nobody sleeps. And kissing skinned knees, and buying braces, and taking pictures when your kid goes to his/her first prom., and making a thousand PB and J sandwiches. And making macaroni and cheese every night for a month, because your child wont eat anything else. And being as protective as a mama lion, because this is YOUR cub. And saving for college, and knowing it probably wont be enough. And doing laundry every day of the week, because he/she "has nothing to WEAR!" You do not have to give birth to be a parent. Something to think about, anyway. Parents, please share your thoughts. I have been diagnosed with osteoarthritis, and they say it couldn't be rheumtoid or fibromylagia, but I am extremely fatigued. It is getting worse. Need naps, but can't get them. Then the pain, soreness, numbness,stiffness , and migraines hit , and I throw up and can't take food or my pills for several days. The occurrences are more frequent and closer together. They have become a routine part of my life and it is harder to function or to think straight. I received facet injections every three months in neck and lower back and it does not help as much as it used to. I cannot take the arthritis medications as my stomach is gone. It refuses to take them anymore. I have tried 7 now, and I hve had many different reactions and side effects. Frustrated, confused, and somes panicky. HELP! Get a second opinion! Osteoarthritis does not cause severe fatigue that I know of, but fibro, RA and a gazillion other itis-es do! And, if the episodes are occurring more often and closer together, then you definitely need someone who doesn't just pat you on the head and go about their business. See someone else and keep seeing someone elses until SOMEBODY comes up with some answers. Life is too short to be miserable all the time. Hope this helps! Submitted by DeeTee Any advice to share with Cher? I would like to know if anyone out there has fibromyalgia and what NON-cortisone medication helps. I have heard Neurontin is a good one for this condition, but am still waiting my doctor appointment to discuss this with him. Also, any other fibro patients out there who are injecting B12 or B complex? (it is not absorbed well in pill form in fibro folks). My fibro doctor also suspects I have systemic candidiasis, so I have cut way back on anything with sugar and/or yeast in it. That is truly a tough task for a sugar junkie such as myself, but I am really trying. Anyone else out there heard of this? The only thing I've found to help the muscle aches of fibro is Biofreeze (http://www.biofreeze.com/). I buy it in the roll-on version because then I can even put it on the back of my neck or my waist by myself. As for pills, my RD has given me Darvocet-100 which I take one of at night. It keeps the pain down long enough for me to get about 6 hours of sleep. Don't know what to tell you about the sugar problem. Hope this helps! Submitted by DeeTee Let's hear from the Fibromaniacs out there.