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I've Been Sick For 7 Mo Now


tiger
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The last couple of weeks I have been feeling horrible. My body feels achy and I feel like my muscles in my chest and legs and neck don't work as well. I am extremely fatigued, just to go to the bathroom wears me out. My heartrate is not out of control at this point. I feel as if I am getting worse and I feel doomed that I will never get better. Has anyone gotten better after this period of time. Mestinon isn't really helping much. Please say some prayers, I don't want to have to go to the ER again. Is there any hope for me??? :D

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I was bedridden for the first six months and it was more than 8 months before I started seeing signifigant improvements, and I still have a ways to go yet. Many with POTS recover quickly, but there are many who also need months or years to improve.

Just keep fighting! If your meds aren't working well enough, ask your doctor if you can try something new or a different dose. I know I'm still fussing with doses and I've been sick for more than a year now.

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I know your frustrations and feelings of hopelessness also. I've been "severely flared" with symptoms for over 13 months and sometimes wonder if I'll ever have good days again, but when it first started, I was very sick for the first 2 1/2 years and than had more functional days for two years until major stress in my life caused another flare up 13 months ago, so I'm hoping in a year I'll be back to functioning at a fairly toleratable level again. I'm unsure if I'll get back to my previous level of functioning completely as from what I can tell, this flare up made my symptoms more severe than when it first started and have felt close to death many times, but trying to be hopeful that things will eventually get better again. Try to not stress about being sick or give into those hopeless feelings as they really do nothing to help and may actually slow your recovery at whatever level that may be :D

God bless,

Tammy

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Hi,

I know how you are feeling. I have been "sick" with POTS for a little over 3 years. I have a few weeks go by where I feel somewhat "normal" but then I get very symptomatic...I got POTS postviral..

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There is Hope. I know it doesn't seem like it, But 4 months ago I was in a wheel chair. Now I am able to move around. I still have really bad days I don't get out of bed. But I remind keep reminding myself how far I have really come. Focus on the small things. It what keeps me going. When you look at the whole picture it's easy to get depressed. Never give up, keep going. I know I can beat this! I think alot of it has to do with staying positive!

I hope you start having some good days soon! :ph34r:

Amy

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Sara,

I have had POTS for nearly three years. I haven't gotten much better yet, but I really do hold out hope that this thing will someday just up and go away as fast as it came. I also suffer from muscle symptoms -- i.e., weakness and wasting. I have found physical therapy and doing any exercise possible to help. Even if I feel like it's going to kill me, I drag myself out to go for a walk, get on the elliptical machine or do some simple PT-prescribed strengthening exercises. If you haven't had PT, ask your doctor to refer you.

I also have found cod liver oil to be of benefit, I think because of the vitamin D. There is quite a bit of research that any disease autoimmune in nature (which some cases of POTS are) can be helped by vit. D.

Seven months is actually not very long -- here. I know it can feel like an eternity, but just know that many here were very sick the first year and then got a lot better. I think I've heard the figure of 5 years tossed around as an average recovery time.

Amy

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Try to keep your head above water....I mean, don't get tripped up in all the day-to-day ups and downs. God willing, it will get better overall, little by little. I don't believe in "normal" anymore. I don't think it's fair to ourselves to demand that of our bodies, not with this condition. I think it's important to decide what's most important to you, what things make you feel real, alive, and happy, and put them first and find ways (maybe new ways) to achieve those things. For me, I need to be useful. I need to help. My daughter satisfies this for me, because I know even just smiling at her is helpful for her personality development, etc. Also prayer gives me a sense of purpose and self-fulfillment.

I am taking social psyc this semester, and recently read about how, at the onset of a "catastrophy" (i.e., what the individual thinks of as tragic for his/her life), the person feels and thinks that he/she cannot cope and imagines that life w/this problem is never going to be enjoyable. However, when questioned about quality of life/satisfaction with life several years down the road, the problem always takes backseat to the person's coping devices, optomism, self-esteem, etc. As the author wisely put it, there's the problem and then there's EVERYTHING else in life. When the problem becomes old news, everything else in life evens it out and more.

My point: Feeling better doesn't always mean getting better.

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I'm still waiting for a dx, but I do feel a bit better now that I'm taking Toprol XL. I still get potsy episodes, but I have improved and have faith that I will improve even more.

Take care and know your not alone.

Amber

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Sara,

I was 20 yrs old when I got sick (had mono, PE, pneumonia sp?, hyperemia) early in my first pregnancy, which miscarried at 8wks. I expected to become "normal" after the miscarriage, and just became worse and worse (although the infections died away, the fainting, dizziness, brain fog, weakness etc. got worse and worse). 6 months later, I decided to get pregnant again because I assumed that I was going to die and wanted to leave behind a child who could do the things I never got to do. Thankfully, that pregnancy set my health on an upward road.

I was fainting three times a day when I became pregnant the second time. First trimester, it just stopped. For three months I did not faint. That was really amazing at the time. Although a couple weeks after delivery, I started fainting again (5 times a day due to exhaustion and lack of sleep), I still felt a lot better overall, and I slowly progressed over the following three years to a nearly functional state.

I care for myself and my daughter independently, and although I know my episodes upset her (she is only three and brings me pillows for my head--cutie!), I know also that she is the best gift I am giving to the world, and the best gift I've gotten from it too. So I totally encourage you, if your doctors think it's right for your type of POTS etc., to have a child anyways, even though you feel sick now. Or at least, I wouldn't assume that your chances are over, if you wanted children, just because you've developed POTS.

And anything else you want to do with your life...it's all just a matter of adjusting your method and time schedule...Like, I wanted to be a nurse....too bad, that really can't happen, but I might give back to medical care more as a patient than as a nurse, if I can help raise awareness about POTS (I plan to revisit every doctor that told me I was crazy!!)...or college, I just do Distance Learning...working...I work from home... The pace is different, and that can be a big blow to busy people...but just remember that more is not always better.

Here's the rhyming version...

Diagnosis Q&A

Question:

Laughing?it?s so funny?the pain away.

Crazy?what?s my option?the doctors say.

Trying?nothing else left?to hope and pray.

Dropping?that?s a keyword?both work and play.

Speaking?to myself now?words fly away.

Holding?small and gorgeous?my baby girl.

Falling?will they catch her??scenes spin and whirl.

Tired?POTS?day after day.

Fainting?all or nearly?my life away.

POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS*POTS

Answer:

Cool. Slow.

Work from home.

Salt. Stroll.

H2O.

Calm. Friends?

Family stays.

Love. Life.

Anyways!

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Yes there ishope for all of us. I went from using a wheelchair to riding a bicycle again. The condition seems to be cyclical- often about remission then relapse.

Go with it, but do NOT give in to it.

Be an active participant in your health care- read up on th edrugs availble (the DInet website is a good starting point) and ask your doctors about them.

Go for it! :)

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