Stiffness and swelling

    • Anonymous
      December 30, 2008 at 11:20 pm

      [FONT=”Lucida Sans Unicode”][B][COLOR=”DarkOrchid”]Hello Friends! I havent posted in forever but I’ve been keeping up with everyone! I’m doing better now that I have been in years because of IVIG…THank Goodness! HOWEVER, i only have one complaint…Every morning when I wake up my hands are stiff and seem to be swollen and my legs are stiff. It takes me a minute to get out of bed! Is anyone else having this symptom? Also, does anyone have hair loss after IVIG???[/COLOR][/B][/FONT]

    • Anonymous
      December 30, 2008 at 11:23 pm

      Hi Lauren,
      Those symptoms are very familiar with some of the members. I am positive there is others with hair loss because we just discussed this about a week ago. Go into the search mode and type hair loss and it should give you the most recent topics. One of the ladies (can’t remember for sure which one) but she is having a terrible time right now with hair loss and they think it is a side effect of IVIG. Let me know ifyou can’t find it and I’ll help you.

      Take care and nice to see you back

    • Anonymous
      December 30, 2008 at 11:27 pm

      [FONT=”Century Gothic”][COLOR=”DarkOrchid”]Thank you Sherry! I will do that! Terrible thing to be losing hair at age 23!!! [/COLOR][/FONT]

    • Anonymous
      December 30, 2008 at 11:31 pm

      Hi Lauren
      I just remembered, Julie is the one that was posting about hair loss. 23 is a time to be enjoying your beauty but you’ll figure out ways to do your hair that helps.

      Take care sweetie and let us know what we can do to help

    • December 31, 2008 at 1:24 am

      Nice to see you back! Anyway, Kevin is stiff in the morning, takes him a good 45 minutes to get going. his ankles are especially troublesome. About the hair, Julie has been experiencing hair loss as well. Apparently it is a side affect (I just learned that) Thyroid could also be a possibility, have you had it checked recently? Have a great new year.
      Dawn Kevies mom

    • Anonymous
      December 31, 2008 at 3:05 am

      Great to hear that you are feeling much better!
      I have CIDP and yes, my legs and back are always stiff in the morning. Also, if I have been in one position for too long – My legs stiffen up – I have noticed that the stiffness is worst if I have been overdoing things!
      Good luck!

    • Anonymous
      December 31, 2008 at 7:03 am

      Ditto what Kazza says – in the mornings I’m stiff and puffy, have to work the kinks out, and if I sit still too long like in a long car trip, I’m going to get stiff and have swollen hands and feet. On the other hand, almost everyone I know my age and older has the same problem so you are joining a rather large pack of people who take some time to rev up in the mornings. I think that’s probably why they invented coffee. A morning routine of stretching with a nice cup of coffee to get your kidneys moving that fluid out and some relaxing music like Enya will change how you view getting up in the mornings. I actually look forward to my quiet time and when I wake up extra stiff I just think well that’s two more songs and maybe a half cup more coffee. By the time my husband gets up and the dogs are ready to roll I’m able to move more comfortably and greet them all without snarling at them. ๐Ÿ™‚


      Oh yeah, about the hair thing – you found my post I see… sorry to hear about that at your age, it’s one thing to have gray hair at 23 which can be dyed but hair loss is a little more difficult to disguise. And do you know I have been looking everywhere for silly hats and they are in short supply! I’m seeing another business cropping up to join the party masks…

    • Anonymous
      December 31, 2008 at 7:13 am

      I wake up every morning with stifness in the legs, back and fingers. Looking forward to the day I’ll be able to get out of bed and be able to walk first thing in the mornings. For some reason (I don’t know why) I have been having swelling in both feet again every day.
      Happy New Year

    • Anonymous
      December 31, 2008 at 10:47 am

      [COLOR=”DarkOrchid”][FONT=”Century Gothic”]Thank you everyone! Does anyone know if this stiffness is caused by IVIG or by CIDP? Just curious.[/FONT][/COLOR]

    • December 31, 2008 at 11:01 pm

      I think both, Kevin is usually stiff each morning, but it heightens for about 4-5 days after treatment.
      Dawn Kevies mom

    • Anonymous
      January 1, 2009 at 1:53 am

      The stiffness is not necessarily unique to CIDP. I am often “slow” in the a.m. until my body gets re-trained in what it is suppose to do when awake. Also, I can’t sit to long in one position. GBS residuals make me fidget a lot because of the stiffness and pain (14 yrs. this month) ๐Ÿ˜ฎ There are so many undocumented responses to these neuropathic diseases. I always appreciate whenever an “unusual” residual is being discussed. First, I’m not weird ๐Ÿ˜€ and second just maybe someone has info that will help in dealing with it. I always say “remember that the nerves are your communication system for the entire body”. Think of your computer and messing up just one little fiber ๐Ÿ˜ก It takes time for every nerve to “regroup” and some will never be able to do that. Only as time goes on will we each know how it’s going to “turn out” for us.

      As Gene would say, “take care, be well”.

    • Anonymous
      January 1, 2009 at 3:39 am

      [QUOTE=lalathompson][COLOR=”DarkOrchid”][FONT=”Century Gothic”]Thank you everyone! Does anyone know if this stiffness is caused by IVIG or by CIDP? Just curious.[/FONT][/COLOR][/QUOTE]

      I think for me it’s caused by some or all of the following:

      CIDP – nerves don’t work as well so muscles work harder but not better so get sore and stiff easier

      IVIg – it’s thick, makes you feel like you have the flu, possibly the high protein content adds to the discomfort as well, definately the fluid retention adds to it

      Deconditioning – I love that word – it means I’ve just been sitting around doing nothing too long so my muscles are breaking down, my joints are looser, tendons and ligaments not as strong – need to get off my rear end and lift weights or something

      Age – although you may think you don’t have this contributing having a chronic illness takes a toll on you and I’d be willing to bet there are days when you wake up feeling 100+

    • Anonymous
      January 1, 2009 at 10:29 am

      Julie, you are so positive. I love how you use morning stiffness as a reason for two extra songs and an extra half-cup of coffee!!!! It is turning a challenge into a positive.

      I also am stiff in the morning every morning since that illness started and walk more funny than usual until I get going better. I live in a two story house and used to go start coffee and breakfast and then come back upstairs to dress. Now, I probably would take a tumble down the stairs if I did that. I have tried to start slow, not challenge myself to stairs for a while, and to lie back down half-way through the dressing process to just regroup. In that five minute rest, I plan the day a bit, or ponder what is on NPR, or whatever that gets my brain up and running and thinking forward as well. I am usually moving okay enough by the time I get downstairs to take on the weather outside to go to work, but if it is really icey, I do some things in the house to use muscles before adventuring where flexibility and compensation are needed. I have decided that one New Year’s Resolution is to be more positive, so I think I will try Julie’s approach to mornings!

      Stress (and serious illness) will also cause hair loss usually about two to three months after the major stressor. Low thyroid can as well as Dawn mentions.

      There are cute hats out there made for cancer patients. I used to get a quarterly catalogue of really cute ones from a place associated with breast cancer. We have these catalogues at work for the teens with cancer and I can try to find the name and web address if you are interested.

      WithHope for a better way to live with these diseases.

    • Anonymous
      January 1, 2009 at 10:56 am

      I thought of something else after looking back at your original thread. I think that the stiffness is linked to fluid retention in some way (although it may be causal or both the consequence of overdoing–this I am not sure). I am a lot more stiff if I did too much the day before–standing a lot or walking a lot. It helps the stiffness to be moderate in activity (when possible). It also help to put my feet up when possible through the day or to lie down flat or with feet up late afternoon before finishing the day. I also now get up several times at night because of restlessness or discomfort and move a little to help from waking up so stiff. This helps mornings but is not so good for sleeping.

      A few things that you could try would be the putting the legs up in the day when possible. Being careful about salt especially near the times of IV IgG might help (you get a salt load with IV IgG and water follows the salt).

    • Anonymous
      January 1, 2009 at 4:53 pm

      My stiffness in my legs feels like I worked out really hard the day before even tho I didn’t. I think it is the cidp as it had kind of faded away but returned with a flare and hasn’t gone away since. I have also started feeling it in my arms in the morning sometimes, but I agree with others that it comes if I have been overdoing it, ya know like entertaining family for a week for the holidays. ๐Ÿ™‚

      Also, I agree with others that if I sit for a long period of time it returns. Interestingly tho I stand on my feet for 6-7 hours at a time at work and that is fine. I do a lot of squats to stretch out my calves while I am standing and I don’t really have a problem with that.


    • Anonymous
      January 1, 2009 at 5:43 pm

      [FONT=”Century Gothic”][B][COLOR=”DarkOrchid”]It is DEFINATELY much worse when I’m doing too much! We went to Alabama for Christmas and I felt SO stiff in the mornings….and unfortunately it isn’t something that you can complain about…I’m WAY too young to feel this dang old! Thanks for all the useful info friends! Oh, and happy new year![/COLOR][/B][/FONT]

    • Anonymous
      January 1, 2009 at 7:14 pm

      [QUOTE=WithHope]Julie, you are so positive. I love how you use morning stiffness as a reason for two extra songs and an extra half-cup of coffee!!!! It is turning a challenge into a positive.

      HA! You just haven’t seen me THAT time of the month – there ain’t NOTHING positive about me then except positively grouchy! At any rate, being positive is something I’ve had to work at and I’m pleased to say that after all this time it’s coming pretty naturally to me now. But life has not always been as easy for me as it is now (stop laughing…I’ve actually been in worse situations than life with CIDP) so in perspective I know things could be worse. I never thought I’d be thankful for the hard things I’ve been through but there you go – it made me stronger and made me be able to laugh at my continually evolving self now. :rolleyes: And I still like myself even though I’m different than I thought I would be, I still like who I am, who I’ve become, what I’ve done with my life and I don’t think I’m done either – do you? I can’t give up now, it’s only January 1st! There is a whole year ahead!!!!

    • Anonymous
      January 1, 2009 at 8:28 pm

      Thanks for your comments to us, Julie. I have been pondering a lot how to make life work despite all this. I, too, have been through a lot before, but I have never had as much trouble making a way through it as now. It is not the stiffness or discomfort or strange gait, I do not think, but I hate the lack of reserves and lack of energy to do what I need/want to do. I am very angry with this illness and I do not like myself with neuropathy. I hate that the neurologists keep debating what it is I have and that I am just waiting and watching my body slowly worsen. So much of my life is defined by my ability to work and to make a difference in the world and I feel like I am inadequate now. I also used to anticipate the new year as a step into the next year and a way to think and reprioritize. This year, I feel dread now as this seems more just another time for further loss to come. It feels like I have aged 50-60 years in past two. I try to be positive and to redirect, but I am just so angry about all the changes in life and all the uncertainties. I ask this seriously–how does one live and work with this illness and with the uncertainty that it gives to life? “wishing for hope”

    • Anonymous
      January 1, 2009 at 10:09 pm

      I too find myself getting angry at this illness. I seem to have reached a plateau and find myself searching for the slightest improvement to convince myself I’m not having a relapse. I thought 14 months after dx that I would be able to walk unassisted and the wheel chair would have been long gone.
      Each day everything I want or need to do is based on the energy my body has and I am never supplied with enough energy. The days are long gone when I could accomplish what needed to be done, take a walk in the yard and relax in the evening. Relaxing now uses a lot of energy just to move or lift these weighted legs. I remind myself that there is always someone in worse shape than myself but still can’t help but want improvement and missing the old me.
      To come on the forum and read the postings have helped me through many long, lonely, non functioning days.
      I thank God for what improvement I have made.
      I don’t know how you do it and work.
      May God grant you the strength to continue.

    • January 2, 2009 at 2:34 pm

      Dear With Hope,
      I am GLAD to see you angry!!! This is really the first time you have expressed anger at the disease, therefore accepting it. I know you will not let it limit you because you have HOPE. Now that you are good and angry and it is the New Year, it is time to grab this by the horns and kick its butt!! Go to Dr. L, call him, don’t waste time!!!! I know he will help you. If the secretary gives you crud, (as Jessica Louies had some difficulty with the secretary) leave a message after hours with the service asking Dr. L to call you back and refresh his memory about your meeting at the symposium. Getting an answer and getting better are so close at hand!! If you want, I could come and drive you there and wait outside, I could visit Kelly on the way too!!! Best wishes for a strong inspired new year.
      Your friend that cares about you,
      Dawn Kevies mom

    • Anonymous
      January 2, 2009 at 8:07 pm

      First off? Anger! That kind of goes with the whole ‘depression’ thing, doesn’t it? My docs would for the first year or two ask me ‘if I was depressed’…I could only respond sensibly with: If you had this? Wouldn’t You go thru some depression? Then they’d offer some anti-anxiety stuff [things I do NOT get along well with] and I would decline. Honestly, when your life throws you such curve balls, you are supposed to cheer? I don’t know about anyone else, but I simply try to make the best of this situation.
      Second swollen hands/feet? Most of the time, my hands/feet FEEL much more swollen than they really are. Almost arthritic at times. The best thing I can suggest is what I do to help things along… I hand massage any really noticable swellings [mostly in my ankles and partly due to prior plain old injuries] I massage UP the leg and I’ve had therapists do it to the point that swelling disappears- helps the circulation. It doesn’t take that ‘feeling’ away, but it sure looks better!
      Third, Hair Loss? Wow! Did I EVER have that right after my onset! My skin turned to paper and would flake off in large bits, like big snowflakes. And my scalp too-tho with hair to boot! That is when I KNEW I was more sick than my first neuro’s diagnosis-changed neuros, got right diagnosis. I used common sense and would literally slather hand lotion on my head for hours, then switched to a mild dandruff shampoo and super restoring conditioner. For my skin? I use the mildest yet most effective lotions I can afford. I can slather lotion on my arms and it’ll be GONE in less than 10 minutes! All soaked in. My autonomic body systems do not produce body oils naturally any more-and well, you have to compensate for such losses. Somehow.
      Last? About waking up sore? Do you move much when you are asleep? I think this could have something to do with it, tho I don’t know what. When I’ve a restless night sleeping? I am able to get up and move about better in the morning. Makes no sense but it happens.
      Everyone else here is much more wise than I am tho… but I hope this helps a little?

    • Anonymous
      January 5, 2009 at 3:04 am

      Hmm, wise?? It seems like every time you blink your eye something is different with GBS/CIDP!

      I went 13yrs. without any help for depression ~ sorta believed I could handle it. Now I wished that I had asked my doc for help many years ago ๐Ÿ˜ฎ He was surprised when I asked and I asked why. He replied “because you always come in so cheerful with family stories and other “silly” things that have happened”. My reply was “that’s why I’ve asked for help; you don’t see what it is like at home ๐Ÿ™ “.

      This is not the “think your way to a happy place and get over it” kind of illness. As was already mentioned, there are many chemical changes that take place with these diseases. It’s a wise thing to get help. I know, it can be very difficult when you are not believed already about the nature of the beast but you are the one who suffers ~ not those who are non-believers. So if your body/mind tells you that you need some specific help keep searching until someone will listen!!!