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Medical Forum / Diseases and Disorders / Arthritis / January 2006it's the hands,
Hi All, I've been considering posting this question and I thought maybe it was senseless; but I will, anyway. My hands are painful and becoming malformed. I see a rheumatologist regularly and I have seen an orthopaedic, specializing in hands. Well, my impression is, the hands don't matter - in no way is there any help for this rapid deterioration. My rheumy advises me to wait until the OA is further along in hips, etc., before taking anything powerful due to side affects of the stronger anti-inflammatories. As for anti-inflammatories, they cause so many side affects, I am only taking Motrin at this time and the doc thinks this is fine. The orthopaed has advised nothing can be done to any area of my hands except thumb joint replacement. With some question in his face, my rheumy calls my mushy finger tips (they move sideways, not normal!) psoriatic; the thumbs are osteo and the crook on the fingers is rheumatoid - Two of my fingers are beginning to get so large in the second joint - soon, I will not be able to bend them, not at all. They pain me a lot, but not the pain that is intolerable, just ever present. I am asking why are knees replaced and all other joints; noses altered - in fact I could have my face COMPLETELY reconstructed, yet, nothing can be done to help the damaging affects of arthritis to my hands? With all of the great knowledge in this world - how can I not have help with stabilizing the fingers in my hands? I fully understand the good people in this group suffer far greater problems than I, but I'm just looking to any one of you to help me to understand why the hands are ignored; to learn what any one of you have done for your hands, if anything. Always, the feed back from this particular group is most helpful and caring. Thanks to anyone of you with the time to respond to my possibly "senseless" question. Be well, be happy, Hiker Hiker, No question is senseless. Our hands are very important to us. I remember when I had the beginning of osteo in my hands and I was so concerned about what the outcome would be. I know several of the group have had hand surgery and I've had surgery on my thumb. Maybe someone can help you more, but I wanted to let you know I feel your concern. debbie m. Hi Debbie, Having had successful hip surgery, I was inquiring about hand (finger) surgery. It was explained that those bones are much smaller and the implant was not the same (more like a bendable material) and would only give me about 5-6 years of good use because of the amount of use we normally do (or try) on a daily basis. This was a number of years ago and I knew that I would want to do everything (piano performing, etc.), so I decided not to pursue that choice. Perhaps your doctors can update you on the progress regarding joint replacement for fingers. Joan > Hiker, > [quoted text clipped - 7 lines] > > debbie m. Hi Kiker,,,,, What I do not know is what DMARD do you take for your very active RA? Harv > Hi All, > [quoted text clipped - 35 lines] > Be well, be happy, > Hiker I have a couple of comments regarding your concern with your hands. 'Regarding hand surgery- it is possible to replace the joints in the fingers. I have seen a hand surgeon a few years ago on hte advice of my family doc. The hand surgeon said he could give me a hand that looks better; the fingers would be straight and the joints smaller. He could not guarantee functionality, however, and for me having a usable hand was more important than having straight fingers. I did not have the surgery. Grip strength is important, and with replaced finger joints you may not be able to bring the fingers in close to the hand or make a fist. My other comment concerns preserving hand function. What are you doing to minimize the deterioration? Do you wear splints for working or resting? Do you soak your hands in hot water or use a paraffin wax dip? What range of motion exercises do you do to preserve joint function? I used both resting and working splints and went to physio for the paraffin wax treatments during the first few years of my RA. Although I have finger deviation and fused wrists, I have preserved grip strength and the ability to use my hands. How well controlled is your disease? If the answer is not very, then that is something that must be pursued with your doctor. So, in a nutshell, it is possible to have finger joint replacement, but it is important to consider priorities first because replaced joints never are as good as the original. Secondly there are things that can be done to ensure that function is maintained. Just my two cents. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Excellent reply and I thank you for that. I have a parafin wax bath and I am "scared" off of it - I was using it religiously but the finger had inflammation and the heat made it worse. That was my interpretation, when the particular finger joint became exceedingly painful (that finger has eased now), so I've not used it since, but do enjoy the warmth of warm hand washes and lotions. I am not aware of splints for working or resting. I flex my hands and fingers on my own and massage with hand creams, also, I have a pair of gloves with good "suppression" (lycra and fit snug) intended for arthritis and they feel good. That's the extent of my care for my hands. As for hand function, well, it is not what it used to be and I do drop a lot of things, but yet, do pretty good, comparatively. I have been told by the orthopaedic no surgery was possible - so you have given me more information than he would. Perhaps, I am being too vain, but in the same vein, the damage is worsening as well as looking bad. The joint on the left, pointing finger, is thickening so that I can't close it up to the palm, the closest I can get to the palm, with that finger is a full inch, while other fingers close down to the palm. The baby finger on the right is thickening like the left, I've just described. Also, I will add, the finger tips on two fingers (right pointer and index) are mushy and will move from side to side, not a normal movement. I used Bextra and had great success with that and of course, it was removed from the market. I used Relafin and Celebrex with bad side affects, so as a result, I am using only Motrin and my rheumy thinks that is sufficient, since I am only complaining of pain in the hands....... Probably, my disease is somewhat controlled, since it is my hands that I suffer with most and complain most, about. Is that right? Of course, I am of such a nature, I don't want to see any of this happening, no matter, how slowly or quickly it appears to me. Thank you Rose and everyone else for your input, it is greatly appreciated. Hiker4 >I have a couple of comments regarding your concern with your hands. > 'Regarding hand surgery- it is possible to replace the joints in the [quoted text clipped - 33 lines] > > Please remove "Ima" to reply. a couple of comments: it's an individual thing whether you benefit more from heat or from ice - in fact it may change for the individual from time to time. so if the paraffin bath seems to aggravate things, try icing the painful fingers for 20 minutes 2-3 tiems/day. your first post said the RD says some joints are oa, some pa and some ra. if you do have pa and ra as well as oa, you need to be on more medication NOW,on something from the class of drugs we call DMARDS, which actually affect the course of the disease itself, not just treating the symptoms. today, treatment is supposed to avid joint damage by using these meds early on. if your RD won't do this, you need a new rd. you certainly should be on something more than motrin if you have joints so swollen they barely bend. be sure your rd knows just how much pain and difficulty you do have - don't sugarcoat anything. this is one instance where you should drop the bravery, something many of us find difficult as we are so accustomed to dealing with pain. you might also ask for a referral to a hand therapist, that is a PT who knows a lot about hands. they can help you with exercises to increase and maintain some mobility in your affected joints and can also work with you on good resting splints to give your joints a break at times. as for the joints that have ra/pa rather than oa, there is a procedure called a synovectomy where they clean out the inflammed tissue so the joint functions better. it can be really helpful, but generally an ortho won't want to resort to that until you have been on a variety of DMARDS and have tried cortisone shots in the joints. i just had one thumb done a week ago friday and have high hopes for improvement, but i'd been through all the other stuff first.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > Excellent reply and I thank you for that. > [quoted text clipped - 33 lines] > > Hiker4 Ditto to Nann's post. I went to pt for a while-they gave me special exercises with a ball, which helps with ROM of the wrists and fingers. I do believe that it has been to my benefit. I would definitely ask your doc first, though...so as not to do further damage. I also think Nann is right about a DMARD. It sounds like your arthritis is progressing, and if psoriasis is involved, that could be a potentially more damaging arthritis than osteo. (Though osteo can be very damaging all on it's own; if you also have problems with your hips and knees, perhaps someone should check out if psoriatic arthritis is a possibility?) Or perhaps I have misunderstood you altogether. In any case, I wanted to pass on my hopes that you find a solution and my sympathies for what you are going through. It's scary to see the body you've known all of your life starting to change. : ( Char > Ditto to Nann's post. > I went to pt for a while-they gave me special exercises with a ball, [quoted text clipped - 11 lines] > body you've known all of your life starting to change. : ( > Char And just a reminder, there are 170? types of arthritis out there, not to mention those of us who refuse to fit neatly into any of those many categories. And to emphasize that the first goal is to prevent damage. Find and use a suitable DMARD. Disease modifying anti rheumatic drug. What we got is better and better looking while it works than the replacements are ever going to be. If your are fortunate these can slow or virtually stop the damage either for a little while or even for a long time. And to add, we all have a degree of vanity, but even in the normal aging process have to learn to appreciate function over vanity. I believe that all hands are as beautiful as the people they belong to. (Feet are another matter altogether) Jo I would add to this list. Before going to the Rd again make sure you draw up a list of symptoms. Could be you aren't telling him everything. Do you have morning stiffness, are your feet or knees affected, hips?? Also if you are tired all the time that is important too. Is it always both sides of your body or only one. Does anyone in your family have RA, PA or OA at an early or late age. Some other things to do - make sure what you are doing with your hands is correct. Are you carrying plastic bags or purse with your hands- if so make sure you get paper bags and use your arms instead (bigger joints so less strain on small joints.), use a handbag that goes over the shoulders. Use big tools, ie: good grip knives or large handled brushes. Use grip - ie: rubber to hold bowls instead of hands when mixing things, rubber to open round door knobs. When you can use levers. All my taps and door knobs are levered - not round. Use jar openers or ask someone to loosen all the jars in your house (warn others or the pickles will hit the floor). Buy smaller jars not bulk or transfer things. The lighter the better. If hands are sore use plastic or thin corelle type dishes - lighter to handle. Don't heat full kettle - in fact if alone use a small kettle or use microwave. The rules are bigger grip, levers, friction (rubber) and use larger joints (arms for example or palms instead of fingers). Ice, or heat (depending as you have figured out) and rest (ie: resting splints, finger splints or/and hand splints). Most of all meds - if motrin does the trick are you only taking it every few days or consistently - believe it or not this is important. It does sound though that you might need the bigger guns depending on what your RD says. You may need a new rheumatologist - make sure he listens to you. good luck - if it is RA or PA you need to get this under control. OA is also treated with the dmards (disease modifying anti rheumatic drugs) if it is inflammatory. Aggressive treatment will help save those hands. Good luck, Kelly >> Ditto to Nann's post. >> I went to pt for a while-they gave me special exercises with a ball, [quoted text clipped - 28 lines] > > Jo >I would add to this list. Before going to the Rd again make sure you draw >up a list of symptoms. Could be you aren't telling him everything. Do you [quoted text clipped - 29 lines] > also treated with the dmards (disease modifying anti rheumatic drugs) if > it is inflammatory. Aggressive treatment will help save those hands. I have to add a very well said to the above. Sometimes I even think I really don't have all that much trouble with my hands anymore. Till I remember all the accommodations I've made over time to protect them. It really does make a world of difference. Wasn't easy to learn to live with a little teeny tiny purse that goes over the shoulder and doesn't weigh anything. I no longer carry much of anything but the key to my car and a house key, a couple of blank checks, ID, a credit card and folding cash. And spare batteries for the cochlear implant. Right now I use a small microfiber wallet in a microfiber "fanny pack" that I can carry over my sholder. Leather weighs too much. All the rest of the stuff I used to carry is in a backpack I can throw in the car. Jo It all comes home right now Jo. My hands have been pretty good with the enbrel. Now that I have been off all dmards for 3 1/2 months they are starting to scream and get puffy and red. I am not looking forward to living with only 10 mg of prednisone a day for a year. Oh and the ice, heat, and salmon oil pills which do diddly. So as you say I am doing all the accomodations again and remembering them. That made it easy to write the things to remember. They do help immensely. I do most of them but had forgotten a couple of things. Has you hearing improved much? I often think of you - especially when I hear music. Kelly in North Saanich, B.C. >>I would add to this list. Before going to the Rd again make sure you draw >>up a list of symptoms. Could be you aren't telling him everything. Do you [quoted text clipped - 51 lines] > > Jo > It all comes home right now Jo. My hands have been pretty good with the > enbrel. Now that I have been off all dmards for 3 1/2 months they are [quoted text clipped - 9 lines] > > Kelly in North Saanich, B.C. My hearing with the implant is still improving. I actually test "normal" in a sound room. Music is more than it was without the implant, but still is pretty monotone. I have to do more work on hearing without sight assistance. I've become so dependent of lip reading and captions that I need to consciously work on hearing without them. I need to schedule some time to just sit in the car somewhere quiet and try listening to music that way. But it is sort of like giving our cat Molly a bath. I've never tried it. As long as I don't try it, I can assume I could do it if I tried right? Jo >But it is sort of like giving our cat Molly a bath. I've never tried it. >As long as I don't try it, I can assume I could do it if I tried right? If you decide to give Molly a bath, how about I send our Rosie along for one too? You'll be experienced then. Kelly, ON topic, I was so impressed with the information you gave on hands, it summed up everything I have heard from the OT who made my night splints and taught me exercises, and everything else I had seen or heard. You are awesome! --- Joan > On Sun, 22 Jan 2006 20:18:32 -0800, "Jo Firey" <JAfirey@NETZERO.NET> wrote > in [quoted text clipped - 6 lines] > one > too? You'll be experienced then. Laughing. I'm experienced. I've given every cat we've had for the last forty years regular baths. I'm pretty good at it. But in most cases I've started with them when they were kittens. Molly is a special case. She was an adult feral when we got her. And she keeps herself clean. So I tell myself I could and let it go at that unless I ever really have to. Jo > Molly is a special case. She was an adult feral when we got her. And she > keeps herself clean. So I tell myself I could and let it go at that > unless I ever really have to. > > Jo Hi Jo, Most people do not understand really how wild a feral is. I, for one, think you showed exceptionally high intelligence by not trying to wash that cat. LOLOLOL Harv I taught Arthritis Self Management Plan for 2 years - you get used to it Joan. Thanks. Before Spring I should put in the gardening with arthritis tips. There are lots of helpful ones. Kelly >I taught Arthritis Self Management Plan for 2 years - you get used to it >Joan. Thanks. Before Spring I should put in the gardening with arthritis >tips. There are lots of helpful ones. I'm taking your post to heart, Kelly. I am having a flare now due partly to stress. My hands are really sore and I have started my finger exercises again which I forget about when I feel well. :-( --- Joan >>I taught Arthritis Self Management Plan for 2 years - you get used to it >>Joan. Thanks. Before Spring I should put in the gardening with arthritis [quoted text clipped - 8 lines] > --- > Joan I very well know what a flare can do to a persons hands. For one thing,,, it robs a person of nearly all their strength. I remember one day my wife came out and got me out of my truck and told me to put my hands under hot water for awhile before I tried to go to work. I was just sitting there. I could not turn the key and I really tried. My hands hurt sooo bad. A friend of mine made me kind of a clamp to help me turn the key. Where there is a will,,,, there is a way. Harv > Where there is a will,,,, there is a way. I had to use a pair of tongs to get an egg out of the carton yesterday! Today I managed. Of course the fact that I forgot to take my meds yesterday morning may have had some effect! :-) Duh... --- Joan I've been reading all the "it's the hands" posts. My doc uses my hands as his example of bad hands. In the 70's many of the joints were replaced but they've all failed. I can do most everything--not really small tasks. I drive a lot (36,000 mi. last yr.). I've learned to use "weapons". In the drawer next to the sink I keep self-opening needle nose pliers, self-opening lg. and sm. Fiskar scissors, nut crackers, various jar and lid openers, cheap knives, button hook, regular sm. pliers, screwdrivers, etc. I also have duplicates of many of these items in my closet and the laundry room. I buy a car by first opening the door and then trying the key and other things (love the self-open/close cargo cover). Most of all Remicade has been a miracle for 4+ years. Jan O' Jan, you mention that Remicade has been a miracle. I'm currently on metho (20mg/week) and have been on it for past 7 or 8 years. Do you take metho with your Remicade? Any side effects from the Remicade? Also, do you know what those injections cost prior to insurance coverage? Thanks, Mark >I would add to this list. Before going to the Rd again make sure you draw >up a list of symptoms. Could be you aren't telling him everything. Do you >have morning stiffness, are your feet or knees affected, hips?? Also if you >are tired all the time that is important too. Is it always both sides of >your body or only one. It can be on only one side at a time as long as it shows up on both sides. My hands used to alternate swelling early on. Thumper >Does anyone in your family have RA, PA or OA at an >early or late age. [quoted text clipped - 60 lines] >> >> Jo >I have been told by the orthopaedic no surgery was possible - so you have >given me more information than he would. Perhaps, I am being too vain, but [quoted text clipped - 5 lines] >the finger tips on two fingers (right pointer and index) are mushy and will >move from side to side, not a normal movement. I missed your original post. I see you are under the care of a rheumatologist, but have you seen an OT that specializes in arthritis? I did and she made me a couple of splints and suggested specific exercises for the fingers. Just a thought, if you haven't already seen one. --- Joan .... Probably, my >disease is somewhat controlled, since it is my hands that I suffer with most >and complain most, about. Is that right? Of course, I am of such a nature, >I don't want to see any of this happening, no matter, how slowly or quickly >it appears to me. Well, not necessarily- I have read somewhere that doctors use the hands as a "barometer" to indicate how the rest of the arthritis is progressing. I agree with the other posters here, if you have RA or any other immune related arthritis, you need to be on a drug called a DMARD (disease modifier) so that you are treating the disease not jus the effects of the disease. Joan said it very well, as did Nann, there are things that you can do and if your Rd is not doing them, find another one who will treat your disease more aggressively. Once joint function is lost, it can not be regained. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. I've had hand surgeries and foot surgeries. The hand surgeries required more post Op rehab, but miracles can be done to hands today. I only had my thumbs done at a hand center. Both tendons broke in my thumbs and the surgeon attached tendons from another part of the hand (part of the forefinger I think) and my thumbs are as good as new. I went to 3 hand surgeons for different opinions and this one was the only one who didn't believe in fusing the thumbs. I'm forever grateful. When I was doing rehab once a week, I saw hands a lot worse then mine. Some were so shifted outward that they didn't look like hands anymore, but more flipper like. As I said, a lot can be done on hands now. Barb C. > Hi All, > [quoted text clipped - 35 lines] > Be well, be happy, > Hiker
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