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Nicole has profound fatigue


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It's been 5 weeks since Nicole dropped 6 levels below the basement when she had this relapse within the relapse. It seemed that she was improving but then about 1 week or so ago she slipped back in some ways- it seems she was feeling a little better and then overexerted a bit not realizing that she could be so vulnerable or fragile- she was barely doing much at all but her body took it as overexerting.

She is still in laying down mode and today she described her fatigue as the worst fatigue she has ever felt. She is so exhausted she can barely whisper when this is going on. Do any of you have this going on or have you ever had it?

By the way- some good news is that her heart isn't as racy upon first standing and her supine blood pressure is better now that the bed is elevated. Although her heart does get racier while she's up and her blood pressure drops. The compression stockings came today and I need to wash that new clothes smell out (she's sensitive to that smell). I am afraid that simply getting them on her (even with my help) could overexert her because of what happened last week when she slipped backwards. Also when she needs to use the toilet she'll be struggling to push them down and pull them back up. I studied them and they seem like they'd be really hard to put on. Maybe should she wait until she is more stable to use them? What do you think? She does lay down all the time still.

Thank you,

Beverly

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Beverly,

Sorry Nicole is going through a bad cycle. I don't have any answers re: the compression hose because I don't use them but I do know a lot about that fatigue you describe.

My dysautonomia kicked in after having brain surgery in 1995 and that's when I first started getting these bouts of extreme fatigue. It can get so bad that I literally don't feel like talking to anyone because it takes too much energy.

The good news is that the fatigue is not a constant, it eventually passes and I start to have better days for a while. I think for a lot of us fatigue is part of the package.

Hope Nicole starts to get a little more energy.

GayleP

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Beverly, I can remember at the onset of Pots that fatigue was overwhelming and ANYthing caused the overexerted feeling. We have had discussion before among some of us who describe our abilities in terms of "activity" points or "energy" points and try to manage our days based on the total points we think we can manage given our current health condition.

When I first came home from the hospital (4 years ago) I was so frustrated that the slightest exertion would overwhelm me physically. My home care nurse told me that I needed to account for EVERY activity; trips to bathroom, shower, washing hair, going to the dining room for dinner, talking to a friend etc. and to realize that each of these actions need an assigned activity or energy point value. In doing so I could decide what to try on a given day based on how I feel. I still keep this in mind today even though I have made much improvement from those early days.

It is best to keep any energy draining actions to a minimum.

On an activity point value, I will tell you that putting on those darn compression hose is HIGH! I wear them away from home still and think they help but they do require a lot of effort. I find that getting OUT of them requires even more effort but that may just be me.

I wonder if Nicole's extra weakness may also be an indication of low volume again? I know she tried the IV fluids and it helped. I wish there were an easier way to get her volume levels checked than a trip to the doctor or ER but I know when I am really low I feel weak and only an IV will help me catch up.

The other thought is didn't she just start new medications? Could it be a reaction to one of those. Most of us react so much to even the smallest dose.

I am so sorry for all Nicole is going through. She is lucky in one sense that you are so supportive and willing to do so much research to try to help her. With dysautonomia it is so important to have an advocate in your corner. I will keep her in my prayers and hope that she will find the right combination to help her.

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Guest veryblue

Sorry that Nicole is doing so badly, as another young person with...well not whatever it is that I have, I understand what she is going through. I have been reading your posts and was wondering, how did Nicole contract POTS? Viral, dose it run in your family, has she always had problems with fatigue and low BP or was she once a bright and virbrant child...how she got stuck with POTS seems to have a lot to do with how she will react to different treatment and will help determine her prognosis. Sorry to be nosy but I was just wondering!

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Geneva,

Thank you for your energy points tip. It sounds like a good way to sort things out. Nicole's so brain foggy and brain exhausted- I may have to make up a chart for her. She has never been this fragile before. This seems to be the worst relapse she has ever had.

Before last May when she was in remission she was doing alright and then CRASH- into the bed for months and then CRASH -deeper into a relapse. She has had 5 crashes in 8-1/2 years and when she crashes she goes from 65-75% functional to 0% functional. The way she crashes so deeply is scary. It's very scary how severe she can get. When she is in remission she is always a tower of cards. Maybe the point thing will help her realize her potential and/or limits whether in a crash, climbing out or in remission.

It's helpful to know for sure that the compression hose takes a lot of energy. It seem like it would. It certainly sounds like maybe while she is so weak and vulnerable - it is not a good time to try them. It's not as if she can go "prancing" around her apartment. She can't even sit up without feeling exerted. The compression hose in her case could end up causing more harm than good at this point.

You remember well about being almost ready starting a new med. She did just get a beta blocker (toprol) but has not yet tried it because her blood pressure is normal almost laying down and when she stands it drops. Her heart rate races up from normal when she is upright so in that case it could help- it all seems so ambiguous.

Nicole definately still has low blood volume but it might be improving by smidges. I look at her veins and she is a little veinier than she was (no veins) but the veinier look is not always consistant. She did- just yesterday increase the Licorice from 900mgs. to 1350 mgs per day. And if she is a responder ( I pray she is) maybe this could be something useful. She does plan to keep increasing the licorice. If this doesn't work we may indeed ask for the saline just to give her body a rest/ reprieve. Nicole's doctor did say if she wanted she could have (or might be able to have) another week of IV saline and we may take him up on it ( if he is still agreeable).

Best Wishes,

Beverly

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Beverly,

I am glad to hear that Nicole's heart rate and BP are better now.

I do have extreme fatigue from time to time. Sometimes I feel like I can't move at all. I can't figure out what's causing it, but so far, it seems to disappear on its own a few days after the onset. Sorry I can't offer any advice.

On the compression hose, I always feel exhausted after putting on the waist high ones. On my pair, the waist part doesn't have as much compression as the legs, so it's pretty easy to go to the bathroom - basically like taking off non-compression hose. You may also want to consider the thigh high version. Although they may be slightly less effective, they are for some reason much easier to put on and you don't have to take them off when going to the bathroom.

I have pretty bad acid reflux from time to time (even before POTS). The waist high ones made my reflux unbearable. My doctor noticed the reflux without my even mentioning it, and told me to switch to thigh high. I bought the generic brand from brightlifedirect.com and they seem to work fine

-Rita

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Beverly, I pray that Nicole feels better soon--this must be so hard on you to watch her suffer so...and you are so brave in your approach and drive to find some remedies for her. I take it you're keeping her doctor's apprised of this latest downturn? You oughtn't be goin' this alone--even with the support of online friends and contacts.

A note to stick in your pocket for the future, when she's doing a bit better than right now: get compression thigh highs instead of full panty hose. It's what I prefer b/c I can't stand anything tight around my waist--and she won't have to worry about pulling them down or up when using the bathroom. Putting them on in the morning and taking them off at night is enough! (But believe me, the struggle for me is sooooo worth it! )

Merrill

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veryblue,

It is my strong opinion that Nicole has a spirochetal illness and Nicole sees it as a possibility. But it is very hard to prove because the tests are unreliable. Once Nicole is less fragile there is a bloodwork order (about 20 tubes worth) to look for all sorts of possible reasons for the POTS. Nicole has many gifts and talents in many ways but especially as a writer and as a visual artist. She's smart and very kind and had dreamed of teaching creative writing at the college level. Before the May relapse Nicole completed her first draft of a short novel and now needs to edit it- just waiting for the brain fog to lift. She is a published poet and has sold a small bit of artwork. One of these days when I am not in the caretaking role and so tired I will write her story for this forum. She would also make a great counselor for sick people- which she has been talking about lately. She's a good listener and has certainly "been there".

Thank you for asking about her and no you are not the least bit nosy. How old are you, veryblue and where is your health presently?

Beverly

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beverly...(and nicole!),

i am short on energy right now...sorry...but wanted you to know that i am reading your posts and keeping up on where things are for both of you...my heart aches for you both. my mom and i are so close and she has also always been my caregiver and advocate...so i feel a special connection to your story...

i just wanted to say that i have definitely had fatigue that is absolutely unbearable and it seems like it would take all of the energy in the world for me to move. there are times i haven't even hardly been able to turn my head or roll over without getting dizzy. and forget any noise like the tv or radio or any conversation! i'm sharing this so you know you are not alone...b/c i find that to be the hardest part...thinking i am alone in this!

as for the compression hose...the advantage is that if you can get them on, it may help stop the cycle a little (i.e. give the energy to be able to get up more and not be lying down as much)...the first few times with a new pair they can be hard to get on. you can use rubber gloves to work them up her legs. but, i don't find them too difficult to get on. you could also start with a much lower compression, which wouldn't be as tight...or even like the over-the-counter ones that are 12-15 mm/Hg...just to see if it might give her a little more oxygen to the brain! :) i put mine on right away in the morning and take them off and get ready for bed. they DO help me to get out of bed in the morning. also, i wear the waist high and the thigh high drive me a bit nuts...so it is definitely personal preference. aahhh, what to do, what to do. ugh! but, now reading that it could make reflux worse, makes me wonder if i should try thigh high again (i don't have reflux, but hate the pressure on my belly!).

aaahhh, rambling. need to stop and hit the sack myself.

nicole....i admire your writing and artistic talents. i know you will find a way to use them. i like to write too....as for visual talent! not there for me! i wish! i tried pastels...kind of comical!

geneva...i haven't been on the board very long and didn't know about the point system thing. that is really great. i need to use that. and maybe explain it to my dad...who is like, 'what did you DO today?' i'm like, 'i got through the day! i got dressed, i ate lunch, i fed the dog!' aaaack! sorry, didn't mean to vent. the point systme seems a good way to pace myself better on good and bad days.

well, i wish i had a magic wand beverly and nicole. i hope your body starts finding its way back out of the spiral soon...i know it is terrifying and disheartening. and i don't always know what triggers it...whcih is so frustrating.

keep us posted...

later alligators!

emily

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Beverly,

If Nicole is so weak is it also possible that she is finding it hard to get all the liquids and salted foods she needs? Fatigue depresses my appetite. If so, maybe getting on the IV fluids before the weekend would be a good idea. I would certainly give the doctor a call tomorrow. If fluids might help her again, she shouldn't have to wait til after the weekend. Also, I have never taken licorice but if the timing of the further regression is tied together I would ask the doctor as well.

Nicole sounds like a very accomplished young woman! I look forward to the day when she is able to post and share more of herself. In the meantime, let her know she has lots of support from her family here.

Beverly and Emily,

THe points system thing is really a concept thing for me. I found it to be a morale booster because when I would complain to the nurse that I hadn't been able to do ANYthing, she would say, well, you took a shower today! I began to see that gradually I was doing very small things to be sure, but things I hadn't done in months. I also learned to use the points to "trade" things off in my mind and gradually I could see I was making progress. I have some friends and family members who, when talking on the phone to them, I use only 5 points and others it feels like 500 energy points (LOL) so I try to avoid those calls.

I think it is Tearose who coined the "energy" point system so must give credit but our concept is the same.

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geneva...

i hate to bug you more...and if you don't have energy to reply...no worries!

i was wondering if you could guide me to an older post on the point system...

or explain it a little more? like, how many points do you assign a shower or eating a meal or going to the mailbox? or going to an appt? or feeding the dog? i need a baseline. i think it would be so useful for me. b/c i say the SAME thing as you...'i didn't do ANYthing today...' but that isn't true. you are right about different people taking mroe energy on the phone...gotta stay away from "toxic" situations...but it is hard! i can FEEL myself hold my breath, tense up...not good! how many points would you have on a "good" day vs. a "bad" day?

no worries if you don't have time or energy to explain. we can discuss it at another time! i just got intrigued by it all...

hope you are having a "good" tummy day!

emily

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Bev

I'm so sorry things have continued to spiral down. I know how tough it is for you to watch Nicole in this crisis.

I honestly can't help you with the compression hose because I haven't bought them. My doctor recommended to keep wearing the Legg's pantyhose with spandex in them and they give me support. I have to be honest, one of my weird pots symptoms is this weird feeling on my skin. I can't even stand not to shave my legs because it's so uncomfortable to have anything on them, I dont think I could survive compression hose.

I would have to agree with Emily about the fatigue. I've never tried the licorice root. The thing that helped me most was plenty of sleep for days on end, fluids and a diet high in salt. I've noticed recently that multiple vitamins help me in the energy dept.

I know many of us have been there more than once and been there for days, weeks or even months at a time. I have spent my fair share of time on the floor, whether it be crawling to the bathroom with my head on the floor the whole way or just not able to get off the floor because my pressure is so bad and hr so high.

When I had pneumonia in the summer of 2001 at the age of 36, I was seriously getting scared that I would never get over that on going horrible fatigue (fatigue isn't a good enough word for it truly, it's much worse than that.) That was my first and one of my longest crashes. My children would bring me meals, tea, juice and feed me in bed. :)

The fear would bring me down but my determination would bring me back up. I know Nicole has that determination and your loving support, it's just a matter of time before she makes the turn around the bend. Whatever we can do until that time, we'll be here for you both.

steph

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One thing Nicole tries to be vigilent about now (although until about 2 weeks ago it was much harder and she was losing weight) is eating and taking salt and drinking. The drinking comes easy because she is so thirsty. Her boyfriend thinks that she is going through nearly a gallon a day. She takes in about 15 gms of Celtic Salt. She chugs some salt in water after eating. We make sure she eats at least three meals per day although her appetite isn't great. She highly salts her food. At night she eats macaroni and cheese - late- and drinks chicken broth with miso which makes if very salty. If she skips this "treatment" then she notices in the morning she feels crummier- more adrenaline-y. So when she does do it she notices a difference. So she really tries to do that and for the most part she does do it.

I think this point thing is important because she spirals backward from doing more than she should be even though she didn't think what she was doing was that big a deal. So trying to measure the exertion factor and assign points might really help.

To answer the question honestly - Yes it is unbelievably, extremely difficult to watch Nicole suffer in one of these relapses. Nicole's father (Steve) and I suffer tremendously that such a thing has taken over her life and all that losses for her that go with it for. There are many times when it feels like it is more than we can bear. Even when she is in a remission- we know how quickly and how far she can fall so she always is like a tower of cards.

Thank you for all your kind words and and great advice and offers of prayers. I am praying myself that this licorice works and that it helps her better retain all the salt and fluid she is taking in. I will keep you informed about it - if it works- and about the saline- if she does go back on it- if her doctor will let her go back on it.

Thank you all so much,

Best wishes,

Beverly

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Hi Beverly,

Some doctors recommend crotchless compression hose. Also, there are gloves (or some kind of device) specifically made to pull up the compression stockings. I tried to look it up for you, but when I typed in "compression stockings", "crotchless" and "gloves" I just came up with a bunch of fetish sites. Not exactly what I was looking for... :)

Michelle

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I don't have much to add, except to say that I also still experience episodes of frighteningly profound fatigue. It is made more difficult being a parent of a 2-year old. But, overall, I am quite well now. When I was at my most ill I was also bedridden for months, some days unable to sit up, my mother caring for me and my infant daughter.

I hope Nicole begins to see improvement very soon. It sounds like that is going to involve finding the right treatment, which you may not have found yet, and perhaps identifying and treating whatever underlying condition or illness may be causing POTS to flare so badly for her.

My POTS doctor has told me in the past that MANY POTS/NMH cases are treatable (e.g. the person can be brought back to a functional level--not necessarily "cured"), but each case is different. Only about 50% of his patients are improved with low dose SSRIs and beta blockers, for example. He said there are 20 or more different medications that he prescribes--plus other treatments (e.g. compression hose, salt, fluids, physical therapy). He told me that in general, the cases he has found resistant to treatment are those that seem to be brought about by brain/spinal damage or malformation. SO, this gives me HOPE that Nicole and others can improve--either with treatment and perhaps with time.

She is fortunate to have such deeply devoted parents. I know how hard it is for you, Nicole's Mom. My mother had a hard time with my illness. Instead of enjoying her first grandchild in the normal way, she tirelessly cared for both of us for months, not knowing if or when I would get well.

I hope you are getting adequate rest, exercise, etc. yourself.

Katherine

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Katherine,

Thank you for your well thought out response. I guess I always wonder if it's possible to find the underlying cause. It seems like there are so many possible underlying causes - where would one go to determine this. In the NDRF Handbook for Dysautonomia there are so many possible causes. How does one begin? It sounds like you have a phenomenal doc.

I'm just curious - if you mind- did you find out what the cause of your problems are? What an awful time you went through at the your baby was born - I am so sorry you had to go through all of that- my goodness- yet I am so relieved for you that you got well and could take over mothering and enjoying your child. Your mother certainly sounds like a wonderful woman. She must have practically cried tears of joy when you got up and about.

I know everyone is different but what do you think got you back on your feet and what keeps you on your feet? Do you have to be constantly aware of limitations so as not to push the envelope? I know I've asked a lot of questions -that's what I seem to be doing all the time- I hope I'm not asking too many.

You are indeed so very kind and empathetic as everyone has been when I post a question. Thank you so much, Katherine.

Beverly

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Beverly

You're welcome. It is easy to be empathetic after going through this yourself and knowing how so very hard it is--and wishing that not another person on earth ever has to experience it.

Yes, there are so many causes, and some that are probably not diagnosable/understood. I guess the primary causes of flare-ups though that should be ruled out or treated aggressively (according to material from Johns Hopkins that my doctor gave me--I'll mail a copy to you if you want to e-mail me your mailing address): allergies, infections, undiagnosed autoimmune or other conditions. The document is about 20 pages and says it is a summary of what is known to date about POTS/NMH/CFS. I found it helpful when I was first diagnosed, in particular.

I think for me, it was a combination of time, low dose SSRI and beta blocker, and slowly stepped up exercise (yoga and walking) that got me back on my feet. In my case, it was very clear that my symptoms were brought on (for whatever reason) by pregnancy and probably also the c-section. As time went on, my body healed from this stressor. Anyway, of course, that is my assumption--my doctor is not willing to say that that is definitely what caused me to develop such debilitating symptoms.

I still have to do certain things to stay feeling as well as possible: increased salt intake, at least 8 hours of sleep/night, regular exercise, regular intake of fluids, beta blocker, low/no sugar diet, minimal stress at work and home. And still, for reasons that pretty much elude me, I have episodes of relapse, that are thankfully short--hours to perhaps a day at most--where I have worse symptoms. But, never so bad that I am home-bound anymore these days.

Take care and keep writing to us.

Katherine

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Dear Beverly,

A good seamstress can make tose hose "crochless" in a heartbeat with a good surger.

You might also consider knee/thigh highs for now.

I can relate to how she feels. this is the first time i've been up in a few days. I'm still having trouble, but i hope to be moving on soon. mabey to the hospital, haha, i know, not funny. i'm still thinking about it as i'm really weak and in so much pain.

i hope she starts to feel better soon.

Blackwolf

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okay...so i am a bit confused.... :D

i remember researching the crotchless hose thing...but it think i remember that they had to be custom made??? not sure...but that costs a small fortune...

still, not to get into too much information here...but i never figured out how they would really be helpful...i mean do you just wear them without panties? or wear your panties over top? neither seems too comfy to me! hmmmm....let me know if you have solved this dilemna!

okay, so a little humor for the night...but i am confused on this one!

never thought about the seamstress idea though blackwolf...good idea!

emily

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Guest tearose

Hi nicole, hi mom beverly! Hope you are able to enjoy some of the beauty of the colors of fall! I hope you are a smidge stronger today.

I wanted to mention that you can use a combination of compression thigh-high hose and a size larger crotchless girdle to achieve good compression without squeezing the life out of your belly! I really benefit from any counter pressure I can manage in my lower extremities and abdomen. Hang in there, tearose

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