Hello again!!

[lilmissposey8088]

Hi peoples!!
It's been a good long while since I've been on here. I wanted to let everyone know that I am in remission after my year long chemo diet! I have been really sick so have not had the energy to do anything. Sorry I had the intent of keeping everyone posted about my multiple myeloma battle but time got away. For those of you who don't know or remember me I have H form of POTS and during my discovery of that I was also diagnosed with Multiple Myeloma shortly after. I have extreme fatigue now and don't know if it's post cancer related or if the time down aggravated my POTS to a higher level then pre-cancer days. I know I sleep more than I'm awake. I tried going to the gym for a month and doing what I could which is pretty limited when your weak and you can't stand and exercise but it didn't help. :/ Any idea to help return some energy. I go see my Cardio in Jan for maybe med adjustments. But other than that???

[LivingInHope]

So glad they discovered the MM and you are in remission- what blessings from God!  Also glad your RBCs are fine now.  I knew it was only a very small percentage a year of people with MGUS who go on to develop MM, but did not know that particular description of bone pain and want to pass that on to my parent who was diagnosed with MGUS- thanks!  I'm happy you like my nickname.  Thank you for praying- my jaw pain can be draining.

[lilmissposey8088]

I used artist in reference to "the artist formally known as prince" just trying to be a little funny. I got your message about the name change. Looove the new name btw!
My RBCs are running pretty good now that I'm in complete remission. I have some iron issues that's been ongoing since b4 the MM diagnosis. But all checks up well now! Thank goodness. Pre-cancer I had some pretty low red counts. Without further testing, my doctors just assumed it was my iron again and put me on iron pills 3x's day!!! After a month of that and my counts didn't go up my family doc was going to look into what the problem was. But, I got pneumonia and subsequently was hospitalized which lead to my MM diagnosis.
What I know of MGUS is that fortunately is doesn't commonly lead to actual Multiple Myeloma. Good news for your family member! I know that it can, but chances are more likely that it won't. I will pray that it doesn't for them. It's a brutal cancer. I wouldn't wish it on my worst enemy! One of the first symptoms I noticed was a feeling of my spine having intense pressure, like it was going to blow up from the inside out. It's a unique feeling like no other bone or joint pain I'd ever had. I was told it's pretty common in MM. So, if you loved one feels anything like this in any bone, I would get them checked right after they start feeling it. It wasn't consistent pain. Only 5 - 20 min once or twice a day.
You probably know all this info but just in case you don't thought I'd share. Had that happening a while b4 they diagnosed me and the reg docs thought it was myalgia. My onco instantly thought MM.
I hope you heal quickly from your procedure! I'll keep you in my thoughts and prayers!

Thanks,
Amber

[LivingInHope]

Artist?  I came on to MedHelp a long time back as Surgimenopause asking an FSH question, but after a  long time, decided I didn't want to go by that name anymore, so I changed my name with the help of a medhelp moderator to LivingInHope!  

Vitamin D is very big with my parent's oncologist.  Multiple myeloma (though my parent doesn't have it at last check) can pull calcium out of your bones, so vitamin D is VERY important in the doctor's mind.  How are your RBCs?  

I'm sorry you are having horrible headaches.  Avoiding giving in to sleeping too much in the day, as inviting and tempting as it is right now with your energy level, may help with sleep at night.  Falling out of that normal circadian rhythm (ie going to bed about 10 PM and getting up not too late in the morning) can precipitate nasty headaches.  Having a comfy bed and pillow and prime body and neck posture are so important too.  

Manageable small steps with exercise goals can help a person feel like, I think this is doable- just five minutes at two separate times of day.  It makes it seem less daunting a task to get started.  Exercise can get those feel-good endorphines going and actually make you feel less tired.  After a few days, you might feel like, I think I can double this- 10 minutes twice a day.  Even if you get no further than that because you just don't have the energy, it is better than nothing!

I recently had a right TMJ arthrogram.  I have problems that make speaking and eating painful.  My POTS continues pretty similar to a couple years ago, just a little worse, I think.

[lilmissposey8088]

Why hello artist formally known as Surgi! lol.
I'm on a lot of supplements but not vit D or Sam-E. So I will def ask about it. I'm going to keep trying the exercise route, it's just so hard. I know the things in life worth doing are usually not easy. I'm going to try easing into it and out of it and doing it a couple times a day for short periods sounds like a good idea. Getting the motivation this week has been trying. I just want to sleep all day! Then night comes around and I get a terrible headache, same time every night, never fail. So, I'm up fighting my head til 3 or 4am. So frustrating. I sometimes wish I could down a starbucks with extra espresso for the energy, without having the after effects from it. To bad the people who need the energy the most can't tolerate it. :/
Hope you are doing well!

Take care,
Amber

[LivingInHope]

I have a parent with MGUS, which can potentially lead to multiple myeloma.  Are they having you take a lot of vitamin D at times too?  You might ask your doctor if you could take over the counter Naturemade brand of Sam-E for a mood boost and it also supports joint health.  Might help you feel some better if you get a mood boost!

Regarding exercising on the recumbant bike- you might try five minutes twice a day for several days, then ten minutes twice a day for several days, and keep working up to as high as you feel you can go beneficially.  Splitting it up to say, morning and afternoon, might make the goal of exercising seem more attainable.

[lilmissposey8088]

LOL! Rest? What's that? Oh you mean the brief moments between doctor appointments, med schedules, fluid pushing, headaches, and exerting all energy for ADLs? Yep, I've heard of it before. lol.

I am looked up some info on it and it seems that it happens in some people with Multiple Myeloma but is not caused by Multiple Myeloma. It is a rare thing to have but the symptoms are really similar to those of POTS or other forms of dysautonomia.
Symptoms:

    Bleeding in the skin
    Fatigue
    Irregular heartbeat
    Numbness of hands and feet
    Rash
    Shortness of breath
    Swallowing difficulties
    Swollen arms or legs
    Swollen tongue
    Weak hand grip
    Weight loss
(http://www.nlm.nih.gov/medlineplus/ency/article/000585.htm)

It says that it is from a build up of proteins and it makes clumps of them called amyliod deposits. I know that MM causes kidney problems so maybe the filtration of the proteins is a problem that makes this be associated with MM? idk? My brain is still recouping from the chemo I think. I have the memory of a two year old after the therapy. It's absurd.

Hope you kick the cold soon and are back to yourself b4 long! Good luck with all the paperwork also! Sounds like alot to deal with.

Amber

[Heiferly]

Amber,

I was tested for amyloidosis myself ... this year?  last year?  Well, my memory is shot, but I know I did get tested for it.  It wasn't an invasive test as I recall.  Must've just been bloodwork or something routine like that.  So probably shouldn't be too much hassle for them to look into it for you, just to make sure.  

This cold is kicking my tokhes.  I meant to get my paperwork for my SSDI redetermination in the mail today, but it looks like I won't be done until tomorrow now.  After that, I can get back to focusing more on MedHelp stuff (and the growing mountain of paperwork Cleveland Clinic is sending in preparation for my appointment there ... sheesh!).  Remember before we got sick, when we had those illusions that sick people were actually allowed to do silly things like REST?  :-p  Maybe in some parallel universe ...

[lilmissposey8088]

Thanks! I looked some stuff up online to find a connection and kept coming up with dysautonomia as a side effect from some of the common chemos they use to treat multiple myeloma. I was very very lucky and got into an amazing clinical trial that involved targeted chemo. 9 months and complete remission. So I didn't take any of the normal treatments. Now we are hoping and praying that the new chemo got rid of enough of the cancer that my remission is longer standing than the norm at the least. I will def look into amyloidosis and amyloid neuropathy and take the info to my doc in January. Maybe if we can pinpoint the cause of the POTS then treatment with effective results won't be far behind! :D  As I come up with anything interesting I will post it here.

Thank a million!!!
Amber

[Heiferly]

Hey!!!  So great to hear from you!!!!!!!  HUGS!
This is literally from two minutes of research with my textbooks, but from what I can assess, here's the connection between multiple myeloma and dysautonomia:  there can be amyloidosis involved in multiple myeloma (specifically, infiltration of the peripheral nerves by amyloid).  Amyloid neuropathy is a form of dysautonomia.  

I am sick as a dog right now, and up to my ears in stuff I need to do to keep them from discontinuing my SSDI (fun!), but let's keep bumping this thread up because there's plenty of info out there on amyloidosis and amyloid neuropathy and I can help explain how that may link to your POTS if you want.  You may also want to ask your dysauto doc about amyloid neuropathy and whether your POTS might be secondary to that, in light of the multiple myeloma.  

Sorry I can't do more tonight.  So glad to see you're here and kicking.  Oh, and as for the recumbent bike, you may want to try a *really* prolonged warmup and cool down period and see if that helps you any.  When cardiac rehab had me do 20 minutes of SUPER SLOW, no resistance warmup (and the same for cool down) with LIGHT pedaling in the middle, I was able to tolerate longer periods of actual exercise without feeling like I was fixing to pass out (or you know, actually passing out) and the sessions didn't seem nearly as draining.  Apparently I had to stealth-ninja "trick" my body into settling into the exercise and stealth-ninja soothe it back out of exercise mode.  Might be worth a shot for you.  

Take good care of you, keep us updated, and I'll try to get you as much info as I can as soon as I can.  Can everyone help me keep this thread bumped up on the front page so I don't lose it?
Thanks!  Heiferly.

[lilmissposey8088]

My doctors didn't speak of any connection with two. In fact my oncologist had to look up info on POTS and I had to explain to the nurses the different symptoms associated with it and how the disease process worked. I find it very interesting that your family has a history of both! Maybe there is a connection? You never know with dysautonomia. And this is the first time I heard it called a dysautonomia, I think it would be more autoimmune or something. It is cancerous blood plasma cells in the bone marrow so you would think immune. Idk? Maybe there is more people with this connection. I think research is in order!

Amber

[CHRISTYDRAKE]

Is there a connection to your Mulitple Myloma and POTS.  My mom had multiple myeloma and POTS seems to run in our family(although until my son was diagnosed with POTS we didn't know we all had it mildly).  The NDRF handbook lists multiple myeloma as a dysutonomia.  I didn't know what the connection was there.

http://www.ndrf.org/NDRF%20Patient%20Handbook/SecA_pp59-134.PDF
page 70
Christy

[beema36]

I use the recumbant bike simply because its the only way I can exercise without syncope but it doesnt help with my energy level at all. I just try to get on it each day telling myself its doing me good:)
Also your body has been through so much this last year it will take quite awhile to recuperate.  Guess this is where you just have to do what you can and believe it will get better.:-) Easy for me to say I know.lol

[lilmissposey8088]

Thanks Beema!!!!
I tried the recumbent bike route at the gym already. Seemed to make me even more tired. But maybe if I keep on doing it. Maybe only a month of "exercise" didn't give it a fair chance to work. Glad to hear from you! It was neat to see so many familiar names still on here!!! I will talk to my doc about physical therapy. Good idea. Hope all finds you well!

[beema36]

I AM SO GLAD YOU ARE DOING BETTER! I have been worried about you and wondered what happened. I have kept you in my prayers the last year.
The only suggestion I have for getting conditioned would be a recumbant bike. Possibly your cardiologist could put you in physical therapy??
I just want to say Welcome Back!
Beema