Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 ......o........ I would say that you definitely have Restless Leg Syndrome......and you have it bad. I have experienced this strange feeling in my whole lower body, anal and genital areas also, for many years. Isn't is a sad statement for the medical world that there are so many doctors out there making us feel as though we were hypochondriacs or freaks of some kind. This disorder can bring you to the point of desperation and I have thought many times that I would rather be dead than continue this way. Even family members, who have heard it all and swear that they understand.......really don't. You need to find yourself a doctor that truly understands RLS and who will allow you to bring information to him from the internet and from the group. You need someone who is sympathetic and who will work with you, allowing you some input into your treatment. Most likely he will want to do some testing to rule other things out before he treats you. This is something you should welcome unless you have already had this testing.......in which case, you should have copies of them to take with you. If you have not had a sleep study, he may want that. It will not necessarily diagnose RLS, but it will rule out sleep apnea and tell them if you also have Periodic Limb Movement Disorder while you are sleeping. I am assuming that you do not have Diabetes, kidney disease, Rheumatoid Arthritis, Peripheral Neuropathy or Meningioma of the brain. There are probably a few other things that could cause these symptoms that do not come to mind right now. You need your ferritin level checked......not just serum iron........ferritin........and it should at least be above 50. There are some cases of RLS where supplementation with certain vitamins or minerals can help. Your blood tests should tell you if you have a shortage here. This is a long, arduous process, but it is necessary for everything else to be ruled out before you can begin treatment with prescription drugs if that is what you choose to do. It is possible that you have already had all of this done if you have gone through the Mayo Clinic. Now........any kind of doctor can help you. Most sleep specialists are pulmonary doctors, I believe. Neurologists would seem the next choice. Psychiatrists can treat you as well as a good old G P. The most important factor in your choice of doctor is communication and his eagerness to learn more about RLS while he is treating you. There are any number of medicines out there for you to try other than pain killers, which by the way, are what I am taking presently. I limit myself to one a night except in very extreme cases, and try not to take one every night. I also take drug holidays where I go for at least a week without any medication. Your doctor will most likely want to try Sinemet first. Some have great success with this drug. Some do not. It has it's pitfalls as well as all of the others. Parkinsonian drugs and benzodiazpines are quite often tried in the beginning. All of the medications used are listed at our group leader's website and at Southern California RLS Support Group web site......as well as WE MOVE, Jill's web site for alternative methods and others. There are books written on RLS and you can subcribe to the RLS Foundation's newsletter called " Nightwalkers " . I will attach some links to the bottom of this letter for you. Since you are on AOL, you can just click on the link and it will take you there. Be sure to put it in your favorite places once you get there if you think you will want to return. All of these drugs have their pitfalls. Some will work for a while and then stop. Each will work differently for different people. You may want to try alternative medicine and experiement with some supplements or treatments there. I have not had success with this but there are many who have. The best thing I can tell you is to keep your sense of humor and keep your interest in life. Have some things ready to do if you are up at night that will absorb your interest. Try the hot baths and cold showers, massage machines, thumping machines, stopping caffeine, meditation and relaxation. If you do take medication, please make sure that you take holidays and learn as much as you can about what you choose to take. We have doctors in the group and pharmacists. Ask us if you have questions and we will try to help. Ask several times if you are not answered immediately. Remember.......we have RLS also. Dr. Mark Buchfuhrer at Southern Cal will answer questions via E Mail very quickly. Do not hesitate to contact him. He is extremely knowledgable about RLS. His address is : somno@... Put this in your address book. I wish you much luck and send my encouragement to you as you try to find some relief. Please be careful driving and be sure to nap when you can, even for 15 or 20 minutes. Keep in touch, Connie, 63, MD http://www.mlists.net/judson/rls.html " >Jodi's RLS Site http://www.wemove.org/rls_pat.html " >WE MOVE - Restless Legs Syndrome: Information for Patients http://www.sleepfoundation.org/ " >National Sleep Foundation Home Page http://www.netzone.com/~gunzel/rls.html " >Jill's RLS Page http://www.rls.org/order.htm " >Nightwalker membership http://ourworld.compuserve.com/homepages/somno/rls.htm " >Southern California RLS Support Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2009 Report Share Posted April 9, 2009 ,Hi! I tried replying to the address you sent us, but for some reason it wouldn't go through. It said it was invalid.In any case, welcome to the group. So sorry you need to be here! I'm also wondering if you've talked to the doctor about what's been going on. They might have some ideas on how to help you. Also, there are several medications that really do pretty well with combatting swelling if the docs decide to go that route. I wouldn't be shy. If you can reach your doctor, let them know what's going on. What you're going through certainly sounds uncomfortable to say the least. I hope it's not painful. You mention still being hungry. I'm guessing that's a good sign. I mean, if there was a blockage or something maybe you wouldn't be? Again, I'd urge you to talk to the docs. Best of luck!Sandi in VAHello my new family my name is john my e-mail adddress is jiahotby (AT) yahoo (DOT) com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2009 Report Share Posted April 9, 2009 ,Hi! I tried replying to the address you sent us, but for some reason it wouldn't go through. It said it was invalid.In any case, welcome to the group. So sorry you need to be here! I'm also wondering if you've talked to the doctor about what's been going on. They might have some ideas on how to help you. Also, there are several medications that really do pretty well with combatting swelling if the docs decide to go that route. I wouldn't be shy. If you can reach your doctor, let them know what's going on. What you're going through certainly sounds uncomfortable to say the least. I hope it's not painful. You mention still being hungry. I'm guessing that's a good sign. I mean, if there was a blockage or something maybe you wouldn't be? Again, I'd urge you to talk to the docs. Best of luck!Sandi in VAHello my new family my name is john my e-mail adddress is jiahotby (AT) yahoo (DOT) com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2009 Report Share Posted April 9, 2009 ,Hi! I tried replying to the address you sent us, but for some reason it wouldn't go through. It said it was invalid.In any case, welcome to the group. So sorry you need to be here! I'm also wondering if you've talked to the doctor about what's been going on. They might have some ideas on how to help you. Also, there are several medications that really do pretty well with combatting swelling if the docs decide to go that route. I wouldn't be shy. If you can reach your doctor, let them know what's going on. What you're going through certainly sounds uncomfortable to say the least. I hope it's not painful. You mention still being hungry. I'm guessing that's a good sign. I mean, if there was a blockage or something maybe you wouldn't be? Again, I'd urge you to talk to the docs. Best of luck!Sandi in VAHello my new family my name is john my e-mail adddress is jiahotby (AT) yahoo (DOT) com Quote Link to comment Share on other sites More sharing options...
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