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Altruism

4 years later - back to square one

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Hi folks.

Some of you might remember me as the severely  ill mom of a newborn fro 2012. I had an extreme case of delivery-induced POTS. I have slowly become functional, found an awesome job, traveled a lot, went to conferences, bought a home and led a normal life with occasional bad days once a month or less. 

Something changed. I have been having more and more bad days and I thought I can push through, but last night  crashed completely. I am INDESCRIBABLY exhausted, crawled up the stairs last night and had my husband undress me. I lot my ability to speak from fatigue. Today is slightly better, but still VERY unwell.

I remember some awesome folks from here like SeattleRain, MomtoJullianna, many more and while I truly hope you are long gone from here and recovered, I do also hope to see familiar faces to give me hope. Just got my recumbent bike out again. I think I will lose the job I love so much. Worst of all - I have lost hope this will ever go away.. 

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Hi, Altruism! Welcome back to the place where others understand what your going through, (though sorry you have the need to be here). Can you think of anything that might have changed? Medications? Alergies that were introduced that weren't in your life before -- soaps, detergent,  animals , food, etc)

I'm so sorry you are going through such a challenging time. Your right, for many of us it doesn't go completely away - but we do go through periods of long remissions (as you experienced first hand) and can live our lives. Did you try calling your pcp -- maybe your electrolytes or hormones could be off?  Hang in there - Sarah

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I have not recovered yet , I'm still trying to find what I can do to try to fix my body. But don't give up your fight , if you recovered before you can do it again . I hope we all can . How did you recover the first time ?

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Hi Altruism,

I have been where you are.  When I read your post, it does seem like you have a lot on your plate.  All good stuff, but a lot.  I wish I could be as active as I was before this illness, but the truth is, I can't.  I had to learn to prioritize and moderate my activities.  And in my case, pushing through does not work, it makes me worse.  I need a certain amount of rest and recovery balanced with activity.  I learned it by trial and error.  I think also as the others say, that you recovered once and will again.  Just be kind to yourself.   

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Hi Altruism--I remember you as well from years ago.  I am doing a lot better.  However I have had some episodes of relapse.  The last bad one was 7 yrs ago.  I really thought I was headed down for some time.  After several days of feeling off, I became suddenly excessively weak and fatigued and disabled, with extreme OI, after years of doing well.  I recovered after about a week.  Who knows what the trigger was--if there was one.  This condition is still so mysterious.  It definitely seems possible that you could recover from this relapse faster than you recovered from your first bout with this.  But if not, there are many medications that are options. Do you see a specialist still?

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Thanks for the warm welcome, ladies. I am sorry we are all in the same boat...

Honestly, I felt Really unwell for 2 days but today I managed to use my bike, went for a walk, spent the day outside and went shopping twice. And showered lol I tend to try to squeeze in as many activities as I possibly can while I can which might be bad idea but I'm so scared of being stuck in bed again..

MomtoGuilliana, happy to hear you are doing well. I do see a naturopath and a POTS doctor in my county. I am seeing her next week. 

 

Bladerunner, first time I recovered with Zoloft, Klonopin, tons of rest, live in nanny, water physical therapy, EMDR, compression stocking, Powerade and lots of aggressive standing. I never stopped my meds but dropped everything else through the years. Just bought 25 Powerade and new Sigvaris socks and I am starting all over...

i don't think I ever recovered actually. What do you all mean when you say it?  I mean I am symptomatic but feel ok enough to function. My pulse keeps being all over the place, but if it goes from 85 to 115 I am functional.  Initially it was 160 when I stood up and 140 sitting....

 

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Yes by recovered I mean able to do most normal activities.  Able to hold a job.

Glad you were able to do so much.  I do think keeping active is helpful--for me.  Even when I feel poorly.  I know others find that rest in really important. 

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Hi Altruism!  I saw your post and wanted to check in.  I was diagnosed with dysautonomia about five years ago, and have been off of the forums for a while.  I have been busy with work and family.  Found out last year that my daughter has joint hypermobility syndrome (possibly Ehlers Danlos Syndrome), and dysautonomia.  Glad to hear you have been doing so well, or at least were.  I am having a flare up myself, and am trying to figure out why and how to stop it.  My neck has been hurting more each day along with the symptoms, so I am going to the Chiropractor tomorrow.  I am hoping the two are related.  I am also having blood and urine tests done.  I have been extremely tired with this flare up, but am trying to keep up with my workout routine, and going to work.  Driving has been a struggle.  I stopped taking all of my medication in December, but know I may have to go back on some or all of them.  

Hope you are making progress!

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Hello @Altruism

I am so sorry to hear that things have gotten bad again, though I am so glad to hear that you were able to get back on track for awhile! I think that is one of the hardest parts of this thing, the ups and downs, feeling like you have beat it only to get hit by another flare.  The good news is, we do sometimes get those breaks, for which I am grateful.  I have been off and on here for the same reasons.  I get back to things and then I get hit again.  But I have found that my periods between flares have gotten longer and better, and when I do have a flare, it seems to be brought on by something else.  The last horrible one, I found out I needed my gallbladder out.  Once I did that, things got a lot better.  I am slowly learning to take the good when it comes and do what I can with the bad and wait for the storm to pass.  There is always a light at the end of the tunnel, even if there is another tunnel waiting down the road.  It sounds like you are on the right track, restarting with some of the things that helped you before.  I also very much agree with @songcanary about resting when needed; I have finally realized that I don't need to try and be superwoman to push through, because it only makes things worse.  A huge part of my recent (and most steady) success has been lots of self-care.  Downtime when I need it, sleeping in when I need it, things that make me feel good and relieve stress.  I used to feel selfish, but now I realize that taking care of me does in turn take care of those I love.  

Keep your chin up and please keep us updated! xoxoxo

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