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  • leg pain

    I have been having severe pain in both my legs from my knees down to my feet. The pain is all day but at night it feels like my bones are trying to pop through my skin. I went to a neurologist and she said that there is no neuropothy or nerve damage. So if it is not nerves what else could it be. I have taken mag, calcium, and tried the wraps. I have to say that this is my most debilitating symptom. And have had no success in finding out what it is or how to treat except with pain meds. That is only putting a band aid on the problem. I work or use to work in physical therapy and they have a treatment for neuropothy using anadine machine and with infared light. That still did nothing for me. Is their anyone who has these symptoms. I also have tingling, numbness, and very week ankles. I was taking neurotin for 9 months and still no relief. I have tried all the new restless leg meds and still taking cymbalta. Please if you have any info on how to help manage this please share. I hope we all have a wonderful night and a very blessed day tommorow.:sad:

  • #2
    I have no idea - have you asked your rheumatologist if you should consider any additional DMARD meds for your lupus?

    Otherwise, a second opinion from another rheumatologist preferably at a different clinic than your current one is my only other suggestion.

    It sounds awful, and it sounds like you've tried most of the things that you've been asked to try. Lyrica may be one more thing to try.

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    • #3
      I tried lyrica as well as meripex. I just wish I knew if this is part of the lupus or if it is another unwanted condition and because we don't know we can't properly treat. I am with my third rheumotologist and I really like him. I just feel like sometimes they think that I am over exagerating the level of pain and how often. I felt sure that it was probably neuropothy but that has been ruled out. I just wondered if maybe anyone else with sjogren's has problems with their legs and it not be neuropothy.

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      • #4
        leg pain -me too

        This is my first post - I was diagnosed earlier this week as having some sort of connective tissue disorder, and most probably lupus, although the rheumatologist was not quite sure.

        Leg pain was my very first symptom, about 5 years ago. First they thought it was restless legs, but none of the meds for that worked, and over the last few years, it has gotten progressively worse, to where I have trouble standing up for more than a few minutes. I walk into a room and am immediately looking around for where I can sit down. My 60 year old father could out-walk me anyday (I'm 35). I can't go shopping with my girlfriends anymore because I just can't handle the standing and walking. I've been tested for all sorts of neurological disorders, and there is no neurological cause - I've had MRI's of brain, neck, spine - all normal.

        Over the years, I also developed gastrointestinal issues, and just this year, got a diagnosis of gastoparesis ( slow stomach) which led to blood testing to find out what might have caused it, one of which was a low-positive ANA, and that led to the rheumy, who said that I probably have lupus. It has been a VERY long road of expensive tests and frustrations to finally get this diagnosis.

        He felt the leg pain was an unusual symptom, but I have joint pain and stiffness all over, dry eyes, fatigue, and when you lump those in with the gastoparesis and ANA test, he feels pretty sure i have an autoimmune connective tissue problem. He started me on Plaquenil, so we'll see in a few months if that helps.

        Anyway, I'm brand new here - still learning, but saw your post and wanted to tell you that my legs just kill me- you are not alone.

        CleoUSA

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        • #5
          same thing happened to me... at first i am using a cane for my knee arthritis but now its more of my leg problem both legs - both were became unsteady for no reason, actually i experienced it long time ago just recently my rheumy told me it is part of having a lupus. Aside from that I also experience leg cramps while walking or it even wake me up at night. ( guess what! my dad discover a sort of a cream for leg cramps a mixture of hot chili and olive oil, just mixed and massage with your legs, it works) What lupus hits me is body weakness that is to include the pain on my legs. In which, as per my rheumy told me too hard to treat coz there's no specific reason when to attack. Sometimes it won't even if i am too tired but it will even if i am from a nice and sound sleep... thanks God there's always a helping hand....
          so guys .... what we are experiencing is just a part of the big L.
          best regards.

          further, i also have glaucoma and dry eye syndrome not quite sure if the mitral valve prolapse is part of it. I experience all the symptoms - mouth ulcer, fatique, positive ANA, dry eye and dry skin for almost ten years (1998). Sometimes if I experience of fatigue and or body weakness my family just bring me to hospital then discharge me for no findings, bu most of the time i just take a sound sleep then back to normal as if nothing happen. My mitral valve prolapse appear yr 2000, gloucoma and dry eye yr 2003 and then documented SLE 2008.
          .... with God in me, i knew i can face every pain that hits me...He is my strength.
          Last edited by adorable; 12-15-2008, 06:45 AM. Reason: add info.

          Comment


          • #6
            Do you take any pain meds for your leg pain? I take lortab 10 3x a day and two edocet 10 one before bed and always have to get up in excrucitating pain in my leg and feet. I spook with a neurologist and she said that she that it was true muscle spasms. Well he have tried some other muscle relaxer and with no relief. I have started taking a zanax to help reliexe and have not seen any improvement. I would really like to try something that is long lasting so that i could atleast stop taking so many lortabs and it be controled release. I realize there are several side effects but I fell like I am losing some faith. I have two young kids and we just built and moved in our new home for our first christmas and I haven't been able to work to help with financies and I am not ready to to mentally for taking the long journey of disability but it is starting to see that its not only me that is hurting but my family. I want to work and with controlled pain med I can do it and I work in physical therapy and it gives me a sense of being to help others and take my mind of my limitations. I realize it is coming to a point were I have to make a decision for my family and for me about pursuing disability but I feel like I am throwing in the towel.. I want to work even if its part time or prn. The fentynl patches are long lasting and I would like to know if anyone has had good outcome with this long acting pain relief and still be able to work and function safely. Please give me some directions I go to see the rheumy tomorrow. I plan to talk to him about all this but would like a little advice from my very hones friends who knows what it like to deal with chronic pain everyday.

            God Bless
            katie

            Comment


            • #7
              Hi there,

              I am so sorry your dealing with so much leg pain. I just started taking fentynl patches for pain last week so I am new to them. YES, they work wonderful. You put the patch on and it lasts for 3 days and no stomach issues since it is trans dermal.

              Talk to your doctor about them and give them a try. I would suggest you try them first on a weekend or when someone is with you just in case they make you very tired or loopy. They do not do this to me but I have a high tolerance to drugs.

              Good luck getting that pain under control. I highly recommend the patch.:wink2:

              Comment


              • #8
                I am hoping that this will give me long lasting pain relief instead of taking so many pain meds in a day. I feel like the patch will help me keep in moderation and take to many. I pray that soon I will not have to take any real hard pain meds but until there is better treatment availible to help us. I pray that soon we will all have many better days. I had to have my first iv steroid treatment today. Rheumy says other treatments are not responding and if this doesn't work that we will have to experiment with some new meds. He said that i should be wired for a few days but i am still wiped out. Is this normal? I am a little disappointed but in the same breath I am impressed that he admitted that we are going to have to do something different after two years. Please pray for me and my family and for all the rest of us who are having one of those days that are not looking so bright.
                Thank you for being here and understanding. I am not throwing in the towel I just don't feel like a daisy today.

                God Bless and Merry Christmas,
                Katie

                Comment


                • #9
                  My leg pain has varied... see below
                  • my pain most like what you described is how I react to prednisone, doctors blow it off, say pred does not have that side effect, but for me, it DEFINITELY does happen exactly like you described... every time
                  • when I'm most sick, my legs get very tired and burn with little effort, all my muscles do really, like brushing my teeth or folding clothes makes me hurt & tired
                  • sitting or lying still causes GREAT pain/stiffness when i'm in a flare, numbness is much more common, and when i was more thin, i had a lot of hot/cold sensitivity (any extreme felt like a million needles stabbing me)
                  • i have advanced arthritis in knees and one hip
                  • my knee has collapsed under me for about 12 years (one of my 1st symptoms)
                  • my hip locks up and can be VERY painful w/stabbing pain with any weight (kind of hard to walk without a hip, ha)

                  Ok, I think that's it, just thought I'd share so you'd have a good wide range of experiences. I have been given various perscription NSAID's, percosets, vicodins, etc but the only thing that consistently works for me is ibuprofen. Nothing else works like that... not Tylenol, not Aleve, not asprin... just ibuprofen. However, after a bottle a month for 10 years... I'm lying here with intestinal ickies... so I don't necessarily recommend that to anyone else.

                  Good luck w/your pain, hope you feel better soon.

                  Comment


                  • #10
                    Leg Pain/Knee Pain and Stiffness

                    Thanks! I read your reply to my other post. My GP said possible pulled/torn ligament in one knee due to steroids...but I'm not convinced. I do know steroids wreak havoc, just not sure its a ligament thing. I was just on short term.

                    Your symptoms sound so similar to mine. I'm not supposed to take Ibuprofen with the Mobic (which works pretty good most times but can't use when I'm on steroids). I go back to my Rheumy on Friday. My knees still ache quite a bit and so does the area behind my right knee that supposedly has the pulled/torn ligament. My hip hurts too but I think its because I'm walking funny. The weather here in Michigan is so cold. I'm sure that has a lot to do with it. The Tylenol 3's have been getting me through the night. I just don't want anything stronger, right now. Vicodin works too but a little too strong. Need to be clear in the morning! LOL

                    I guess I'm in some kind of flare?

                    Thanks again for your reply.
                    Michelle

                    Comment


                    • #11
                      Leg pain New to Lupus!!

                      Hi I am also new to this website!! I will try to keep this short. I started having problems in April of 2008. I was unsteady, imbalanced could not feel pain, went blind for a few minutes. Burning on my legs and side. The list goes on..... I also have incredible pain in my legs. It is a deep pain and it does feel like my bones are going to explode. I go back to my Rheumy in Jan. I hope that she can help me with this. The burning and the unsteadiness has gotten better I am on the malaria meds 200 mg a day. Maybe if I was on a higher dose? My brain fog and memory of the last year is totally wasted. I really don't remember to much. Is there any help for that? I also take vitamins like they grow on trees. Any ideas how to be helped would be great. I was just diagnosed with lupus SLE in November. I am also having a problem sleeping or should I say falling asleep at night. I read that this is very common. If anyone has a suggestions I would love to hear about it!!:rotfl::hehe:

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                      • #12
                        I don't know if this is similiar or not - I had a lot of problems with my legs being rather tense all day long and then cramping at night. They put me on lyrica for nerve pain but my eyes eventually (several months after I started the Lyrica) became so blurred I couldn't read at times so I had to stop it. anyway, my Chiropractor said that the tenseness in the legs was a form of muscle cramp, just very weak. He suggested drinking Gatoraide every day for 10 days and then see if it didn't help. I drink 1/2 a small bottle every day and it has made a big difference. It adds a lot of minerals and stuff to your body that you loose with water pills and steroids.

                        Comment


                        • #13
                          Sleep deprevation is a real problem for me!! I can't fall asleep and if I do I wake up several times during the night. I take a generic brand of ambien and I have also tried lunesta both have worked pretty well for me except when my bones are cutting through my legs. If you talk to your dr about not getting rest he will probably give you something to try because with lupus we have to get plenty of rest. We just do! I have started taking lyrica 400 mg a day and I am seeing some good results so far with the pains in my legs and feet. Please let me know how you do because you sound like I did when I was diagnosed three years ago. I had to stop working for the past two years and I am feeling better and more confident so I accepted a position at dr's office. I am really excited and I will never know if I am ready until I try. Plus we now have a house mortgage. Please let me know how you are doing and if your doc will give you something to help you sleep and with sleep you will feel some better. God Bless!!

                          Comment


                          • #14
                            I have trouble sleeping at night and my rhuemy gave my lunest and it works well and then he changed it to generic ambien because it is cheaper with my insurance. You should talk to your doc about your sleep habits and he will probably want to try something. Because with Lupus sleep and rest are essential to us as candy is for kids. I now take lyrica 400 mg a day and we are seeing some great results I just hope if doesn't fizz out on me. It has help more with my leg pain than anything I have tried and I have tried a few. I didn't do much for me the first times I took it because the doses were so low. But now I feel their just might be a light at the end of this cursed tunnell.
                            Please let me know how you are doing I was just like you three years ago. Keep in touch. Hope you have a blessed day!

                            Comment


                            • #15
                              leg pain - different...

                              i read the comments about leg pain and nobody has described it the same as mine..i was diagnosed with lupus when i was 12, i am now 19. over the years i occasionally had pains in my leg and stomach that felt ilke a muscle tensing up.. but it wouldnt relax or move. it first happened when i was staying the night at my friends house and i was laying on her bed talking then all of a sudden i couldnt move and she moved me to a spot where i was comfortable.. the pain went away.. but i still couldnt move myself and i was stuck like that for about 20 minutes. it's been happening more often, but in my legs. it's been happening almost every morning, plus waking me up at night.. i also noticed it in my toes a couple times if i moved them a certain way, and my hand only once.. has this happened to anyone else? i'm going to call my doctor about it tomorrow, but he's out on mondays, so i can't call today. :sad:

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