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  • Loss of grip in hands?

    I'm turning here because honestly... I'm beginning to feel hopeless... I'm giving ya'll the full story so hopefully someone can help me make sense of this... If anyone has experienced this symptom, let me know if they ever fixed it or if they believe it was caused from Lupus.

    My primary dr referred me to a rheumatologist when I started noticing that I was losing my grip in both my hands. Rheumatologist at the first visit mentioned 4 things in particular, one of which was lupus. He had me grip a blood pressure cuff that was at 20. I was able to squeeze it up to 40 w/ my right hand and 45 w/ my left... (I'm right handed) The Dr. then squeezed it up to 145 as a test so obviously something is wrong. He asked lots of questions and narrowed down his search to 2 things, MS or Lupus... He scheduled LOTS of tests. Blood tests all came back normal except the test showed inflamation... I don't know much more than that as they don't exactly elaborate. X-rays were great. Electric shock nerve tests and muscle tests showed nothing out of the ordinary. MRI was fine so no to MS. Dr was "surprised" when my ANA came back negative. "I Was so sure you were going to be positive on that test from your other symptoms" And that pretty much explains the last 4 months. Lately it has gotten significantly worse. I decorate cakes as a lil side job and the last cake I was working on I had to use both hands to squeeze the decorator bag and my fingers were turning white and I had to change my design for the cake to accommodate the latest lost of strength

    Today was my appt where I assumed that I would get an answer to why at 25, I can't even open a box of cereal. My Dr looked over my test results today. ALL of them (this would be the third time for some) He looked over my hands and kept talking about how there's no evidence of bone damage (yes we covered that 2 visits ago)... He then started talking about how he believes that this is something in the early stages, and he's almost sure its Lupus, but we are going to give it 3 months. "I'm going to prescribe you some naproxin for the pain and we'll do some blood tests in 3 months"......... This was the point where I began crying like a baby... I can no longer do the things I enjoy. I can barely wash dishes. I'm a stay at home mom w/ 2 kids under the age of 3 and over the past 4 months while waiting for the Dr, I have gone from a little grip to the point where I can barely put my baby in her crib cause I lose grip of her at last minute and she lands roughly on the mattress (from about 2 in off of it so it doesn't hurt her... just makes laying down a sleeping baby that much more complex)... Something is wrong... and if this is the early stages of Lupus, or anything else for that matter, what is it gonna be like when I have reached full blown??

    Has anyone experienced a loss of grip like this w/ Lupus? I have ALOT of the symptoms and the Dr seems sure it is lupus but he wont treat it. I know diagnosis of lupus can be a long process, but I need answers NOW... If this is lupus, something needs to be done. If I just have Lupus and this is unrelated then lets address that...

    I don't know where to go from here. I know I'm going to get a second opinion. with the symptoms I have even the Dr was sure it was lupus and I know it imitates but why wont he try SOME kind of treatment. If I wanted pain meds for my hands I could have just gone to the er 6 months ago when they began feeling achy and not waited around to see a Dr who wont give me any help. I've learned to cope with the pain for the last 6 months... I just need my hands back !!!

    any help would greatly be appreciated... Personal experiences are welcome as that's all I really have to go by now... From what I've learned about lupus, its different for everyone and I've found some stories online where people have a problem with their grip but no one really elaborates so I guess its not as much of an inconvenience as this is.

  • #2
    Hi Esangston,
    It seems to me that your Dr is doing a great job, lupus is hard to diagnose especially if you don't have any positive results and Dr's are causious of diagnosing for alot of reasons, insurance being one of them.
    It can take years for lupus to show on test results, so a second opinion is good but you may find the exact same results and then more added frustration, i have been there and done that on a few occasions.
    I have found that my mobility in my hands has changed some days i can't open anything with a screw lid, or i have to hold my coffee cup with two hands cos i don't have the strength in in one to hold it, i drop things as well so i know your frustration as do many of us here, and having to young children it is even more so.
    I've had the muscle tests as well and like you all normal. I do have discoid lupus, but not SLE, but there is a chance i may have Sjogrens.
    I am surprised that he has'nt given you some meds for, even just to see if you improve.
    If you are set on finding out whats going on, push the Dr you've seen for more help.
    Sorry i can't be of more help, i'm sure there will be others that will have more to add and good advise.


    • #3
      Welcome to the site.

      A few things came to mind. One is possible Raynaud's. You mentioned your fingers turning white. Now when it is cold that could happen to anyone but when you have Raynaud's it can happen any time. When my Raynaud's is bad my hands don't want to function properly.

      Second was along the same lines as Karol. When my nerve issues flare up certain things become impossible to do and my strength goes down. Just holding a pen to write a check can become very frustrating. My neuro claims it is due to a brain, nerve, muscle disconnect.

      I hope your doctor finds an answer soon.

      Take care,


      • #4
        Hi and welcome,

        I agree that you may not get any further if you sought a second opinion but if you think it might help then by all means do it. This doc does sound like he is doing the right thing, he is trying to relieve your inflammation (the Naproxen won't fix the underlying disease process but it will calm down the inflammation-giving you less swelling if you have it, more mobility and less pain) and I think you said you were positive for inflammation on blood tests.

        He is also following you closely by seeing you again in 3 months and testing things periodically. Three monthis is a normal wait on a return appointment even for those of us who have a confirmed diagnosis and active disease. If the active disease includes organ problems though we are often seen at closer intervals until things settle down.

        As mentioned Lupus is a very difficult disease to diagnose for some patients and medicating someone accordingly is not a good idea unless you are pretty sure they have some kind of connective tissue disease, of which Lupus is one. You said he mentioned several other things it might be, so he is indicating to you he knows there is definitely a problem, he just doesn't have enough evidence yet to determine exactly what's going on.

        If the hands are your main problem and if your only positive bloods are your inflammation markers right now then he's done really all he can do without possibly doing you harm , he knows you have inflammation but really it could be from many conditions. I know that's hard to hear when you are feeling so horrible :hug: but he's following normal protocol until the situation becomes much clearer and it's a road many of us have been down before.

        I'd try the Naproxen taking it on a full stomach of course and giving it at least 2 weeks of daily dosing before you decide it's helping or not. It can take that long to build up and start calming down the inflammation. It has helped many of us be more comfortable during the diagnosis stage and many of us remain on anti-inflammatories as well as our more Lupus specific drugs.

        I too am wondering though if this might be a Raynauds issue by your describing your fingers turning white. Do they go through stages of red and blue as well?

        In the meantime have a look at the pinned notice at the top of Not Diagnosed Forum which describes the criteria used to guide a doc as far as a possible Lupus diagnosis goes. There might be things in there you have had but didn't think to mention to him and they may very well be relevant.

        take care,



        • #5
          Hello and welcome!

          I'm sorry you're experiencing this. It's very distressing!

          I have experienced a loss of grip in both of my hands like you describe. I have also had both of my hands lock up to the point I had to pry them open and avoid doing certain things to keep them from locking up for fear they would lock up permanently. Eventually the problems cleared up but it took many months and I still have to be careful to prevent another flare up. My problems were due to inflammation of connective tissue (synovitis).

          It sounds like you have a knowledgeable and caring physician who is taking your concerns very seriously. Like the others, I think he's doing a good job and I'm not sure you would learn more from a second opinion at this point.

          The only thing I would recommend is that you ask about seeing an occupational therapist. An occupational therapist helped me immensely and I still use everything he taught me, including hand strengthening exercises, to maintain function in my hands. Also, hand splints help immensely --- they protect and stabilize everything reducing movement (friction) that leads to increased inflammation. You don't need to wear them all of the time, just when things get bad or to prevent strain. Your doctor or an occupational therapist can prescribe them for you or you can find very good splints available over-the-counter at most pharmacies.



          • #6
            I forgot to mention that it would be best to stop decorating cakes for a while, until the inflammation has gone down and you've regained strength in your hands. The action of squeezing the decorator bag is putting too much strain on your hands at this time and will prvent your hands from healing.



            • #7
              Thank you for all your replies. Its reliving to know i'm not the only one having problems with my hands and maybe the dr is in the right direction. Your the first people I have talked to with lupus so its great to have an insight. Do drs ALWAYS wait for a positive ana test to diagnose lupus?? I thought positive was more often wrong than right w/ those tests...

              When ya'll talk about losing your grip have they tested anything?? I was just wondering if your results come back as normal as mine do. The dr even stated that he doesnt see anything medically wrong with my hands.. which is one of those phrases that honestly makes you feel crazy... but I guess i can understand it... kind of... nerves seem to be talking to my hands... muscle tone is fine... and theres nothing in my brain causing it... I hate feeling helpless and just sitting back wondering what I wont be able to do next week... I cant exactly stop decorating cakes but I understand why you would suggest that... I have a very busy internet coupon clipping service and my cake customers and they provide the extra income that allows me to stay home with my munchkins and still be comfortable... and honestly doing both is become more and more challenging everyday.

              and i do have an appt with an occupational therapist on the 31st.... He only sent me up for it when I started crying at his pain medication rx and his comment come back and see me in 3 months... I know i probably seemed dramatic and he only did the therapist to get me out of his office but hey. He did say that hes sending me to the therapist "to help me learn how to use what I have left" which seemed a fairly bit rude but whatever...

              I have been diagnosed with Raynaud's, My ob and a nursing specialist referred me to a doc when nursing my daughter was painful and he said it was Raynauds and told me to take b6 while i was nursing. The b6 helped the nursing pain, but never did anything for my hands. I have the traditional changing colored hands in the cold or when stressed but its never been a problem until I was nursing... granted there was always a lil bit of pain but whatevers wrong with me has been going on for a couple of years... so i've gotten use to the pains and aches... I've asked my dr if the Raynauds could be to blame for my hands and he never gave me a yes or no. Honestly it seemed as if he didn't even care about my grip at all. He's not a very "caring" dr on the outside. He was always really cold and would never explain anything. I think the second opinion is more so to find a dr that I actually like (esp if this is gonna be a long term process which it seems it might be) and to get the answers regarding my tests that I couldn't get from my current dr. I thought he was incredibly thorough as the blood tests had me running to 3 different labs but I just feel as if he's ignoring the main problem here. I'm losing more and more every day and I can't just sit on my tail and wait til I have nothing left. He had everything he needed to diagnose lupus except that stupid ANA...His words there, minus the stupid lol. Maybe it was just the way he walked in, looked over results hes already seen and then treated me like another one of his arthritis patients and then diagnosed pain meds. He didn't point out naproxin was for inflammation, he said specifically I'm giving you something for pain. I knew naproxin would help with the inflammation, but I actually JUST got off a month of it as my primary's trying to find a med that works to keep away the migraines, which my Rhum dr says has nothing to do with whats wrong with me from his "scope"...... And when I told him that, he upped the milligram dosage. I mentioned to him that my i just got off an rx of prednisone... my family got viciously attacked by poison ivy and we cant figure out how or why it keeps coming back lol... and I didn't notice alot of difference in my grip, there was some just not alot but at this point any improvement is enough to write home about lol. the pain was minimal though. And he didnt even seem interested and he has this way of brushing off my questions.... I just don't like him and didn't feel very taken care of...

              But why is it that he couldnt have run the blood tests again from this last appt??? its been 4 months since my first blood test.
              Last edited by esangston; 05-18-2010, 03:00 PM. Reason: cut paste didnt cut lol


              • #8
                I understand why you want to change Dr's now, i've had the same problem and still is having, i need to find a new Dr as well but not an easy task.
                I need to see the Dr and i am putting that off for as long as possible, i know i should'nt but i have to wait for my hubbie to have a day off as well, so he can come with me, just seems that i get a better appointment when he's there.
                Then maybe changing Dr's will be a good thing for you.
                In the mean time maybe getting some supports for your hands like it has been suggested will help.


                • #9
                  Hello there,

                  Using Ya'll makes me think you live in the south of the good ol' USA. I am in New Jersey, the arm pit of the world. LOL
                  Welcome to the board and glad you found us here. First and foremost I am sorry for your struggles.
                  I went through many doctors before I found one that worked FOR ME....who was willing to think outside the box.
                  Being diangosed with Lupus when your ANA is negative does happen, but it is rare. We do have some ANA negative folks here on this board.
                  This requires a doctor who is willing to step outside the box and take the tunnel vision glassed off. They are hard to find.
                  A diagnosis is helpful to us, the patient, yet what is most important here is not so much a dx but getting you on medicine to treat what ever is going on and get the inflammation down.
                  A diagnosis puts name to the unknown, make sense? Honestly if Lupus is written down on paper then you have a tough time getting life insurance and other things so for me personally I would rather them write nothing on paper.
                  OK, I am having a very, very, very hard time with my hands. My situation is identical to yours and what your describing. In the morning when I wake up the pain in my hands is excrutiating and I cant move my fingers.
                  It is almost as if my joints have locked up on me and I feel like my hands belong to a woman who is 90 years old.
                  This coming Friday I am gong back to my doctor and I am going to request a x ray be done on both hands.
                  I have not had any tests done to justify what I am feeling but I can tell you that other areas of my body don't work and sometimes the test results do not help us understand why we feel what we feel.
                  Come here for support, to ask questions, vent, rant and rave as we all do. The people here are awesome and really supportive and knowledgeable.
                  Concentrate not so much on getting a diagnosis but on getting a doctor to work with you and not against you.
                  When you find will know it.
                  Good luck, keep us posted.


                  • #10
                    Originally posted by KarolH View Post
                    Using Ya'll makes me think you live in the south of the good ol' USA. I
                    lol... Georgia girl born and raised... Ya'll just seems to fit better than really anything else... nothing else fits lol! I hope you get some relief for your hands... I feel as if I'm about 90 as well but not from pain... just lack of function... My hubby got me a violin for christmas as well as a set of cool new drumsticks for our rockband (LOVE IT) and I have yet to enjoy either. I cant push down hard enough to change the sounds to learn my violin and I'm a health hazard for everyone else if I play rockband... I cant grip the sticks enough to not fly them everywhere... my entire life has been affected... its so sad cause now my 3 y/o knows what I can and cant do... "mommy I was gonna ask you to help build my blocks with me but I dont want to have to keep picking them up so I'm gonna go play by myself" :-(((((


                    • #11
                      AWW Hun, I'm so glad my kids have grown up enough ( 18 & 15 ) to be able to do for them selves, i can only imagine how hard it is for with little ones.
                      Yes we all lose lots of things to lupus, i use to love to golf and played 3 times a week that was after i had my DLE diagnosis then all of a sudden one year everytime in the sun out would come the rash and i would feel sick after being in the sun, so now i don't golf, my hubbie had brought me a new set of golf clubs the year before, i only got to use them for 1 season (sigh). It's hard, i don't do half of what i use to like knitting and crafts cos i just can't stand the pain from trying to hold things that are small and no grip.
                      But we learn to get over these things and try new things, i'm sure once you have proper treatment you will regain some of your mobility back or learn to adapt.
                      And your kids will as well, even at that younger age. Do you have anyone that can help you out?
                      There is a light at the end of the tunnel be it small it's there.
                      Hugs Hun.


                      • #12
                        I understand better now why you want a second opinion.

                        Re: When ya'll talk about losing your grip have they tested anything?? When I was tested for loss of grip in my hands, different things were found at different times ranging from "nothing medically wrong" to mild carpal tunnel syndrome to nerve damage leading to loss of muscle to the point my hands looked skeletal. Some of my problems were caused by overuse, something that may be contributing to your problems as well (cake decorating + computer use, etc.)

                        Re: poison ivy reaction: I recommend you see a dermatologist ASAP and request they do tests of the hives to determine whether it's just an allergic reaction to poison ivy or if it has evolved to something else such as an autoimmune reaction. Sometimes a skin biopsy will tell your physicians what other tests won't.

                        Re: naproxen: If it doesn't help with pain and or inflammation, try another NSAID. Naproxen didn't do a thing for me. Because you have migraines, you might try Excedrin. It contains aspirin, acetaminophen and caffiene, and is a very effective over-the-counter treatment of migraine pain as well as full body pain and inflammation.

                        Re: why is it that he couldnt have run the blood tests again from this last appt??? Physicians can't order tests without sufficient justification per insurer requirements. Your doctor may think they're required and you may think they're required but if your doctor can't provide the level of justification for the tests requested by the insurance company, the insurance company won't pay for them. That's often the only reason for the wait.



                        • #13
                          Very frustrating, I know how you feel.
                          Sister outside of Atlanta, girlfriend in Statesboro and Savannah.
                          Just love Georgia. Great place to hang your hat.
                          Hope you get some answers soon.


                          • #14
                            i have suffered from this for the past 10 months and i have been diagnosed lupus. I know how you feel , frustrated, alone, confused and really alone. My kids are 6 and 8 and they now help me, along with my dedicated hubbie, to get dressed etc... They ask for crisps, biscuits fuits etc and they have to open or peel them. Its not every day but its enough to be soul destroying. your not alone. there are ways round it. just a matter of meds and relaxation. i find if your uptight things get worse. i go to my consultant next week. i need answers too. if you want to talk im here. vikki x


                            • #15
                              I'm sorry you are so frustrated. Hang in there, the diagnosis process can take a long time. One quick thought: you mention you were on pred - was it for a while? The only reason I ask is that my rheumy says it can mask true results. When I've been on pred previously I've had a negative ANA result. When my kidneys started to be affected my rheumy delayed steroid treatment until I had had every test needed so they would get true test results. Just something to think about.

                              Rebecca x