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Author Topic: Tired........all the time!  (Read 3334 times)

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Offline britchick

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Tired........all the time!
« on: July 04, 2012, 08:06:49 AM »
Hi!

Has anyone got any tips re fatigue?
I was really, really tired in last 3 0r 4 months leading up to my diagnosis....then i seemed to be better for a few weeks.

Im now back to waking at 1 am, 4 am and 6 am everyday!I get up at 6 am as  I cant get back to sleep.Its not just tiredness....my back, knees and legs feel really sore. Cant stay awake after 9pm !!!!!!!!But  I never feel rested.

I keep trying.to walk a wee bit further everyday.......ending up hot,  breathless and panicky!!!!!!!

Anyway........thats.. enough moaning for now!My neighbours must think im so unfit...staggering back from the local shop...as if  I've completed a Marathon!

Any tips much aprreciated!!!!



Britchick x


Offline Common_ground

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Re: Tired........all the time!
« Reply #1 on: July 04, 2012, 08:24:38 AM »
Are you on meds?
I feel the exact same way.

Strangely this happened when I got on the meds and when I knew I was +, dont know whats causing this thou, maybe a combination of both. I didnt have any symptoms prior to testing +, felt just fine.

Little bit better now, but still Im worried 24/7 about future, labs, symptoms, dying, being crippled, bed ridden or whatever. The only time I can relax is when Im just letting everything go and just dont give a sh*t anymore.

Stay strong Britchick, hopefully with time things will get better.
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline britchick

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Re: Tired........all the time!
« Reply #2 on: July 04, 2012, 11:26:06 AM »
Hi Common Ground!

Yep Im on Eviplera.Its called Complera in the USA.Also other meds related to symptoms.

Im new to the board ....... also diagnosed with PCP,pneumonia,CMV , pneumonitis....  ....back at home  now  after a  long stay  in hospital and determined to get back on my feet!

Im not back at work yet.Im driving myself crazy....wanting to do more........just cant at the minute.....even housework is taking me forever!!!!!!!!!!
Im sooooooooo stubborn!
I have accepted my diagnosis......but it doesn't mean I like it!!!!!!!


Hope that you feel better soon.

Britchick x

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Tired........all the time!
« Reply #3 on: July 04, 2012, 02:13:55 PM »
I don't know what to tell you other than what I said in the other thread. You've been one sick lady and it's going to take time for you to recover. Don't push yourself too hard.

It is possible that maybe Eviplera just isn't a good fit for you. If you're still having problems sleeping by the time your next clinic appointment comes around, discuss it with your doctor. It may be that a combo switch is in order, or s/he might want you to temporarily try a sleep aide first.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline britchick

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Re: Tired........all the time!
« Reply #4 on: July 05, 2012, 03:17:42 AM »
Cheers!

I think I will phone the clinic today  as my next visit is Sept... ...The Specialist Nurse gave me a number for any queries.

Thanks

Britchick x

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Tired........all the time!
« Reply #5 on: July 05, 2012, 09:16:23 AM »
Sounds like a good plan. Let us know what the nurse says.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline britchick

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Re: Tired........all the time!
« Reply #6 on: July 05, 2012, 09:59:45 AM »
Hi!

Well I managed to get an appointment this morning.....I got my results from June.  CD4 count 363 VL U/D.I am so pleased.

It turns out that I have had 2 other infections though over the last wk or so.........so no wonder I was so miserable!!!!!!!!!Got meds today!

Was told that my body is fighting back big style!Got another appt tomorrow with other Specialist re lack of sleep!!!!!


Onwards and upwards then!I thought I was being melodramatic.....but Im glad I made that call!!!!

I need to "chill out!"

Cheers for replying!

Britchick x

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Tired........all the time!
« Reply #7 on: July 05, 2012, 11:00:10 AM »
I'm glad you made the call too. Hope the new meds help quickly and I hope the specialist can help you with your sleep problem.

Your CD4s are going up at an astonishing rate. It can take some people years to get over 200 after having numbers in the double digits. Being UD is great too.

Take it easy - and keep listening to your body and give the NS a ring when in doubt. :)
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline britchick

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  • Posts: 445
Re: Tired........all the time!
« Reply #8 on: July 06, 2012, 11:31:25 AM »
Cheers !

Im glad that  I joined the board.It gave me the confidence to make that call.
All I can say is that Im still learning ,still want to learn everything  I can.....Its good to read other people's experiences...and know things can get better.

I hope that  in time  , I can help other people.

Thanks

Britchick x

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Tired........all the time!
« Reply #9 on: July 06, 2012, 11:35:28 AM »

I hope that  in time  , I can help other people.


I'm sure you will!  :)
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline St Ives

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Re: Tired........all the time!
« Reply #10 on: July 06, 2012, 08:19:39 PM »
britchick: I read your posts with interest as I'm experiencing the same problems.
Lack of sleep,energy etc.  My appetite has gone too and I've always loved food!
Lack of sleep I can live with as I've always been a night owl. Lack of energy is frustrating though. It started when I was diagnosed last November with a cd4 of 12.  My energy level has improved  but I still feel 'knackered' after walking a short distance to the beach. The thing that kills me though, I no longer have an appetite. I have always loved food, but now I have to force it down. It was my only true passion ! I've always been 75kgs, I went down to 63kgs, now I'm 70kgs.
In conclusion: Things look bleak at first but slowly improve.   If you can't sleep, close your eyes and take yourself to your most favourite place, and try and stay there a while...it works for me!   I wish you well in your journey and that normality returns to you soon.   
Nov 2011 cd4,12.vl750k - 138lbs      atripla
Feb 2013 cd4,78.(3%) vl<40  - 160lbs    atripla
May 2014 cd4, 127 (6%) vl<40 -157lbs     atripla

Offline britchick

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Re: Tired........all the time!
« Reply #11 on: July 07, 2012, 04:12:12 AM »
Hi St Ives!

Sorry to hear that you are going through so much.I lost 42 pounds in 5 weeks prior to going into hospital.

I couldn't eat more than a slice of toast a day.I was given Ensure juice drinks.... to build me up when i was admitted... think they have approx 330 cals per drink.

I haven't put any weight back on....but im eating really well now.I had to otherwise I was going to be kept in hospital even longer! I got weighed every week there.I was so unhealthy before....and fussy!(Cant eat red meat..dont like milk...Im a nightmare!)

I make fruit salad for breakfast, grill veggies with herbs/garlic etc at dinner and shock horror even eat brown  brea.d and pasta now !!!!Even grill or bake plain fish or chicken wrapped in foil/herbs

I dont know if you could manage any of these foods...but  I started off with really small plates.Spices and herbs helped me.
Are you in the UK...with the name St Ives?If so I've been there about 15 yrs ago .....We were visiting the navy base at Helston and took off for a day out.Its a beautiful place!

I hope that you get your appetite back soon.

Britchick x

Offline britchick

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Re: Tired........all the time!
« Reply #12 on: July 07, 2012, 04:16:49 AM »
St Ives

Also meant to say I make enough food and put it in the freezer when im having a "Good Day".....that way  Idont have to cook If  im beyond tired!!!!!!!

Offline St Ives

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Re: Tired........all the time!
« Reply #13 on: July 07, 2012, 05:13:36 AM »
42lbs...wow!
Like you I now eat little and often. I have days when I think yuk and other days when I pig out.
I live between St Ives, Cornwall, and Chiang Mai, Thailand.  The food is great in both locations.
Fish is the way to go. Try grating some shaved fennel on it before cooking...yummy.
You visited Culdrose Naval base. I once went to school in Helston. Cool place.
  Like you, this forum has helped me enormously. It's educated me and helped me come to terms with my condition. Thank god I found it.
Be well.
Nov 2011 cd4,12.vl750k - 138lbs      atripla
Feb 2013 cd4,78.(3%) vl<40  - 160lbs    atripla
May 2014 cd4, 127 (6%) vl<40 -157lbs     atripla

Offline Pilot

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Re: Tired........all the time!
« Reply #14 on: July 07, 2012, 08:52:56 PM »
I have noticed that when I go to the docs they always check fatigue on the chart even when I have not mentioned it.  Anyone else notice this ?  It is not like they are giving me anything for it and I wonder if it has something to due with the charges for treatment.

Offline littleprince

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Re: Tired........all the time!
« Reply #15 on: July 08, 2012, 02:20:05 AM »
I had PCP about 2 years ago. A collapsed lung to go along with it and then a bout of IRIS so all in all about 5 weeks in hospital. I was told by my doctor then that it was going to take me 12 months to get back to a 'normal' level. He was pretty much right. The first 3 months were rough and I was always tired. It started to improve slowly after that and by 6 months I was 70-80% back to normal. I took a full year until I actually considered myself at normal energy levels.

Give it time. If you've had PCP you're lungs and body have taken a beating. the only thing that is going to help is staying on meds to keep your viral load down and letting your body recover at it's own pace.

Offline britchick

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Re: Tired........all the time!
« Reply #16 on: July 08, 2012, 08:31:56 AM »
Hi !

St Ives....Cornwall and Thailand ...both sound pretty good to me!!!!!!!!!!Best of both worlds !I will try using fennel with fish!

Little Prince...cheers that makes a lot of sense re recovery time.

Pilot...yep they ask me re fatigue, sleep patterns and assure me that it will get better...so fingers crossed!

Britchick x

Offline AgilityAddict

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Re: Tired........all the time!
« Reply #17 on: July 09, 2012, 07:13:02 PM »
Hi
Listen to little prince. You need to bargain on a year to get back from the number and severity of illness you've had. Be patient, build small by small steps, set small and manageable goals and use your team to help you manage the whole you: body, exercise, better diet, rest, and soul!
Don't give up, keep plugging away but in small chunks so you don't set yourself back.
Best wishes x

Offline 2manyquestions

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Re: Tired........all the time!
« Reply #18 on: July 11, 2012, 02:35:13 AM »
Of course take better care of yourself and work to improve your health.  Consider THC (active ingredient in marijuana), to help add weight, gain appetite, reduce body aches and likely improve sleep.  My doc recommended it and it really does work.  Even if it's not your thing, it's a tool that can be used now and then.  I can't imagine trying to regain the weight (and keep it on) without it.  I never knew I could lose my appetite, like after becoming HIV+.  It also is available in many forms such as a pill, oil / butter for cooking, candy, etc as well as in the dried herb form which can be smoked or vaporized (no smoke).  Not trying to create a commercial or anything, just my experience.  I will say that, for me, I only use it a few times a week to get the best results.

Best of luck!
« Last Edit: July 11, 2012, 02:44:03 AM by 2manyquestions »

Offline britchick

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Re: Tired........all the time!
« Reply #19 on: July 11, 2012, 06:46:33 AM »
Hi 2manyquestions!

Cheers for that.Im always keen to hear other peoples tips...only thing is  my lngs are so damaged and Im on so many meds.....so its a difficult one!

Britchick x

Offline britchick

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Re: Tired........all the time!
« Reply #20 on: July 11, 2012, 06:47:11 AM »
Brain fog!!!!!!!!!I meant lungs!

Offline Theyer

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Re: Tired........all the time!
« Reply #21 on: July 11, 2012, 03:38:27 PM »
Hello Britchick and all I clicked  on your thread after a whole day sleeping after two days off temp and aches and pains , fortunately now just weak and foggy. I am not a newbie and this pattern off illness is well known to me, but I still find it helps to drop into the forum to settle myself.

Also wanted to agree with all that's been said about recovery time and keeping in touch with your clinic.

Well i need to eat so best wishes to you
Theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline britchick

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Re: Tired........all the time!
« Reply #22 on: July 12, 2012, 09:52:50 AM »
Hi Theyer!

Cheers for your reply.

Im really new to this....and dont really know enough yet so hopefully someone can give a newbie  advice!

Pre diagnosis, (and a few yrs of pain!)I was told that  I had Reactive arthritis and Fybromyalgia.

Now I've been told that the aches and pains are par for the course with HIV or Aids related illness.The fever nearly always means  infection .


I know this seems a little crazy..but when my back and legs are sore  I turn on my heated blanket....yes  I know its supposed to be summer here, in the  UK ,but even  if im feverish....the heat from the blanket seems to dull the pain!!!!!!!

My family are so fed up of me turning heating on and off all the time!

Im optimistic..as ever!!!!!!

Britchick x


Offline St Ives

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Re: Tired........all the time!
« Reply #23 on: July 12, 2012, 09:49:11 PM »
That's exactly the right attitude to have. I'm 9 months into this illness and things are much much better than at the beginning.
Aches and pains have gone, along with numerous side effects. In fact, life's pretty normal again and yours will be eventually.
Keep being optimistic and look forward to the future. I'm sure that in a year from now you will be assuring others that it gets better. 
Nov 2011 cd4,12.vl750k - 138lbs      atripla
Feb 2013 cd4,78.(3%) vl<40  - 160lbs    atripla
May 2014 cd4, 127 (6%) vl<40 -157lbs     atripla

Offline britchick

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Re: Tired........all the time!
« Reply #24 on: July 13, 2012, 09:30:03 AM »
St Ives!

 Thanks.Its true a wee bit of time makes things better!
When I left hospital  I didn't leave the house at all!
So im getting somewhere now!I set goals from the first week ....like walking to the shops......going out on a bus .....its tiring but so worth it!

Definetly Optimistic......most of the time...but  I do have my down days too!
Yes  hopefully as you said, I will  be feeling better and helping other people.

Britchick x

Offline 2manyquestions

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Re: Tired........all the time!
« Reply #25 on: July 14, 2012, 01:38:22 PM »
For me in dealing with tiredness, eating well and sleep is the best medicine.  Sometimes I need help to get it, sometimes I just have to really change my daily patterns to allow myself to be able to sleep better.  Ie when I have caffeine, when my last meal is, making sure I have time to wind down from the day before I need to be asleep,etc.  basically just reducing stress.  If I can't seem to get an appetite then it's THC (which also helps with sleep).  I understand not wanting to smoke, you can vaporize or ingest it.  It takes a bit to learn all that and get setup with something that works well for you.

My legs and back sometimes ache like crazy so I wrap them in an electric blanket at full blast, it helps.  Also Epsom salt baths, the occasional massage, muscle relaxers can help a bit.  Pain meds don't seem to do much since its more of a fibromyalgia type of pain as you describe, my doc says there's not much more to do about it.  The fybro meds apparently don't work too well and you have to take them for a very long time to expect any results at all.

Offline britchick

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Re: Tired........all the time!
« Reply #26 on: July 15, 2012, 05:52:26 AM »
Hi 2manyquestions!

Cheers re reply.

I posted on another thread a couple of days ago about using then  electric blanket too.it really helps...although my family cant believe I use it when its supposed to be summer here in the  UK!

Before my Fybro diagnosis then the poz diagnosis....I felt like  i was going mad!I kept thinking am I imagining the pain......because of course no one  else can see it!!!!!!!!

At one point  I was crawling round the house because  I couldn't stand up .I also fell over a few times last year............(no alcohol involved!!!!!!)

Plenty of alcohol after!!!!!!!!!!!!

One of the days  I was with my mum when it happenned,  I droppped all of the shopping, potatoes and carrots went flying down the hill , along with me......my mum was trying to lift me up, plus catch all the shopping!We both ended up crying with laughter!

Now that  I know its part of our diagnosis.....I can begin to deal with it better.I cant take Ibroprofen p/k or co codamol  re pain (caused internal bleeding) only  plain old paracetemol!

The one good thing to come out of all of this is that its real, im on treatment ,Im not going mad...and things should get better!!!!!!!!!!!!

Cheers
Britchick X

 


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