Backsliding

[friday]

I have been salt loading for months, and my blood pressure seems to be up around normal most of the time in the docs office.

I'm not sure about when I get up. It changes , but it still seems above the normal level.

I started walking . I started out with 5 mins. then added a minute a week. I was doing okay with that for a while. I was able to walk farther and it felt good.

Then I got sick from my period and a sinus troubles, and was in bed for a month.

I finallly started getting better from that and I got hit with another bad time during my period.

Now I am trying to get back the energy to walk again, but it sems like one day I can do it and then I won't be able to for days at a time.

And I am sooo tired awhen I wake in the morning. It takes all day to wake up. When I finally do, It's time to go to bed.

It's so frustrating cause I'll finally be feeling enough energy to do something and I can't bcause I don't want to keep myself up .( I'd pay for that the next day)

But I just feel like I have no energy all of the time. Sometimes it's hard for me to get out of bed. Let alone take a drive somewhere. I do manage once in a great while. I'll go for a short ride. But Then I feel lousy again the next day.

I'm just very scared that this is getting worse.I dont' want to live my whole life in bed.

I dont have my own family and don't have any friends visit so I am very alone. When I get a ride out to the doctor's, it feels so good just to be around people.

I just a so frustrated and scared because I thought things were maybe improving a little. And now it seems I'm back to square one. Has anyone else gone through this Have you ben able to build your strength back up?

Sue

[jenwclark]

Boy, does that sound familiar. I've been trying to build up my endurance for the last couple of years, and it just feels like the results are completely random. I'll be going along fine for a few weeks doing regular light exercise, then suddenly it starts completely knocking me out. Then, after two weeks of doing almost nothing, suddenly I have a single day when I can do more than ever. Then I'm back to my muscles feeling weak when I'm just lifting dishes back into the cabinet.

It's so frustrating, because I'm sure my lack of conditioning is part of the reason I feel so tired. But if there's some magic balancing point where I can build up my strength without making myself sicker, I haven't found it. I'm still trying, though.

Overall, the ups and downs do more or less even out, so I wouldn't worry too much about a downward trend just yet. When I'm recovering from being sick, it takes incredible patience to get back to my "normal" level of activity. It can be really draining emotionally.

So, I'm not sure I have any constructive advice, but I wanted to let you know you're not alone.

Hang in there.

spike

[nadine]

Sue-

I feel your frustration. I have also been trying so hard to walk, first trying to improve my balance and second to build up strength. I walk mostly in the downstairs of my house, an occasional good day will allow me to walk my long drive way with someone with me- this is not often, but trying to do this. I will also have several horrible days after a good day. I am guilty of trying to do too much on those occasional good days

I haven't driven in over a year, but same thing - going for a ride can completely drain me.

It is frustrating to have a couple of good days a month if I am lucky and think that things are improving, then just back down again. I cope by enjoying the days and moments that I can---that's all I can do at the moment and just keep trying to keep my strength up the best I can.

[juliegee]

Sue,

I'm sorry that you're backsliding. This may not be "news" to you, but it really sounds like you've got the symptoms of Chronic Fatigue Syndrome. It's relatively common with POTS. What meds are you currently taking? My son has CFS, POTS and NMH and went from being housebound to functioning pretty well. He's actually attending school this year! There is definately hope. Do you have a good doc, who is working to tweak your regimen? Keep your chin up. I'm sending positive energy your way.

Hugs-

Julie

I have been salt loading for months, and my blood pressure seems to be up around normal most of the time in the docs office.

I'm not sdrome. ure about when I get up. It changes , but it still seems above the normal level.

I started walking . I started out with 5 mins. then added a minute a week. I was doing okay with that for a while. I was able to walk farther and it felt good.

Then I got sick from my period and a sinus troubles, and was in bed for a month.

I finallly started getting better from that and I got hit with another bad time during my period.

Now I am trying to get back the energy to walk again, but it sems like one day I can do it and then I won't be able to for days at a time.

And I am sooo tired awhen I wake in the morning. It takes all day to wake up. When I finally do, It's time to go to bed.

It's so frustrating cause I'll finally be feeling enough energy to do something and I can't bcause I don't want to keep myself up .( I'd pay for that the next day)

But I just feel like I have no energy all of the time. Sometimes it's hard for me to get out of bed. Let alone take a drive somewhere. I do manage once in a great while. I'll go for a short ride. But Then I feel lousy again the next day.

I'm just very scared that this is getting worse.I dont' want to live my whole life in bed.

I dont have my own family and don't have any friends visit so I am very alone. When I get a ride out to the doctor's, it feels so good just to be around people.

I just a so frustrated and scared because I thought things were maybe improving a little. And now it seems I'm back to square one. Has anyone else gone through this Have you ben able to build your strength back up?

Sue

[scarfgirl]

I think almost everyone here knows what you're going through. It's a constant uphill battle, and it does seem that many times I lose more ground than I gain. The worst is every time I catch a cold spending that week in terror that I'm going to have a relapse just b/c I caught a sniffle. And I had my birth control altered to stop my periods b/c I couldn't afford the downtime from them.

Have you tried physical therapy? I found that altering my exercise depending on how bad my illness is really helped me to get more control. Just a thought.

And you may feel lonely, but trust me, you're not alone .

Cheers,

Stacy

[friday]

H I just wanted to thank everyone for thir responses. I have been sick all week, ( what else is new) and didn't feel up to writing before now..but i sitll had to some back here and thank you all. It's nice to know I'm not alone.

babu

[friday]

Sue,

I'm sorry that you're backsliding. This may not be "news" to you, but it really sounds like you've got the symptoms of Chronic Fatigue Syndrome. It's relatively common with POTS. What meds are you currently taking? My son has CFS, POTS and NMH and went from being housebound to functioning pretty well. He's actually attending school this year! There is definately hope. Do you have a good doc, who is working to tweak your regimen? Keep your chin up. I'm sending positive energy your way.

Hugs-

Julie

Yeah I was actually diagonsed with CFS yars ago. I only fnally got the POTS diagnsed after seeing a CFS specialist.

I don't rerally have a doc that I see specifically for POTS.

This CFS specialist a I see is very expensive and I'm on Medicaid so of course, they won't pay for any doctors like him.

My G P is pretty useles for treatng it. Really I've only run into a about 2 doctors that actually even heard of POTS.

And so they have no clue on how to treat it.

Anyway,

I only see this specialist only once every few months. so it's slow going.

I've tried Midodrine,

Metprolol, Mestinon.

I've tried Provigil fro the CF but it doesn't sem to do anything. Basically nothing 's helpd so far.

I do salt load ,which seems to have finally raised up my BP.

So the only thing I can do now is keep readng and trying a new med very few months.

thanks for the reply

babu

[lalalisa]

Wow, I also understand your frustrations. It's been a long and hard journey for many of us. I'm impressed by your drive to keep trying to exercise. It's just so hard having the ups and downs of POTS - and trying to keep going. The fear of a crash is always there...haunting me.

On a side note - I too have been trying to exercise...

Dr. Grubb told me to try swimming. He actually stressed that this was extremely important. (swimming is his best recommendation for POTS patients and exercise....when youre in the water your bp is actually regulated more like a normal person.....also since youre posture is more flat you don't get the blood pooling in your legs) They weren't easy words to hear because at that point just getting dressed was such a huge task! So, I was determined to try. My first day in the pool was very difficult .... I picked up a kickboard and slowly attempted to kick across the pool. I've very very slowly worked up to 5 laps with the kickboard and I'm determined to someday actually swim without it!

I also wanted to add that I don't think I could've swam a couple of years ago as the fatigue was so bad that I could barely lift my arms some days. And even though overall I'm feeling a bit better I still find it extremely difficult to swim...it's a huge challenge for me each time.

Take care and thanks for allowing us to share your burden with you,

Lisa

[willows]

Interesting post this one.

I've been trying to find an exercise for years to 'just keep me supple' having read your post Lisa I might pluck up the courage to have a go at swimming again.

As for the tiredness, well after all these years I now know that what I do one day comes crashing back on me the next ............sometimes 10 fold So knowing this I set up my own daily schedule and it is as follows;

8-9am Get up slowly , showered ,dressed etc.

9-10 am Do any pottering about the house , mail, Internet .

10-12 am Any shopping with carer ( either driving or driven )

12-1 pm Lunchtime and the news on TV.

1-4.30 pm I always try to rest on the bed in a semi flat position , either watching TV or DVDs ,

working on my laptop , reading a book , crafting , with a glass of OJ and may be an

apple ..............no phone, no callers , no Internet.

5-7 pm Dinner with the family, nattering catching up on son's college etc.

7-9 pm Working on my laptop again on the bed feet up, hubby, son and every man and his dog

popping in to see me ( ooooww, I feel like the queen proped up with my pillows )

9 - what ever In bed asleep ( ha, ha dont make me laugh ) or awake ( thats more like it ) shuffling about

the house , crashing , dropping things and generally annoying hubby and son

IF I want to go out in the afternoons I stay in bed until 10-11 am .

If I want to go out ( ha, ha, ) at night say for a meal or something , I extend my afternoon 're-booting ' to start from 12-5 and have lunch on the bed.

Its really a matter of learning to pace yourself .............Say's she who knocked herself silly at the week-end.

I try to stick to this routine each day and find it works for me , OK I'm only actually up and on my feet for about 7 to 8 hours a day ...........BUT.............these are all positive , good hours when I feel the best I can given the condition, and this for me works.

Willows..............learn what your body needs each day, keep a daily diary over a week and find you ' tired patches ' and your ' bright awake and go for it ' patches and adjust accordingly .

[India]

Sue,

I'll just add to what other people have said and agree that the randomness is the most frustrating part. I do find that bad episodes correlate with my periods, however, as you seem to find too. That is when I am most exhausted, most tachy, and most out of it.

I too find my symptoms getting progressively worse and I am just out of energy most of the time. I went to see the doctor who is treating my husband for fibromyalgia--and has worked wonders for him because he actually understands the problem and doesn't dismiss it as a "catch-all" diagnosis--and he thinks I may have CFS as well. Before I can receive treatment for this, he has to go through my regular PCP, who is not very broad minded--nice chap, but doesn't think outside of the box and knows nothing about POTS. I believe that many people who have POTS also have CFS and/or fibromyalgia, so finding someone who knows about that link may help you.

Good luck and know that we all sympathize with you.

India