RE: fatigue

[Guest guest]

Hi , I know what you mean about waking up more tired in the

morning than you went to bed the night before. I was put on

Amitriptyline 75 mg at night which did help and seemed to help the pain

killers do their job too. The biggest problem was the dry mouth

constantly. I drank so much I was up 3 - 4 times a night to the loo.

Since going on to caffine free drinks - tea, coffee, no coke, I only get

up once a night. If you get an answer to our problem, pleasse pass it

to me. I too am so tired of always being tired.

Good luck with the wrist.

Love and hugs,

Lilian.

[Guest guest]

smginleyrn@... wrote:

>

> It is a type of " atypical " sleep apnea, which my doc says is from the EDS. He

says because soft tissues are lax, they collapse, and partially obstruct, or

obstruct the airways causing low oxygen, and poor sleep, as deep sleep is

difficult to achieve.

Now that stirs a thought from when Ann was 4 years old and was to get

her tonsils out. The ENT surgeon asked me if Ann chewed chewing gum. I

said indignantly, No. of course not! I was advised to get her to chew

gum to tighten her throat muscles and help prevent bleeding. So there I

was, teaching Ann how to chew gum. It worked, because she had no

bleeding problems. I did the same with Joy when she was 3 and needed

her tonsils out. After that I gave up on the gum.

It may be worth a try - who knows, I might even try it myself and see if

it works.

Love and hugs,

Lilian.

[Guest guest]

In message , smginleyrn@... writes

>,

>I kept complaining of similar problems with sllep/fatigue, and guess what?

>It is a type of " atypical " sleep apnea, which my doc says is from the EDS.

Sue, I definitely do _not_ have sleep apnoea. I never forget to use my

inhalers before going to bed and I keep my inhalers in a particular

place next to my bed so they are within grabbing range, if needed

(without having to turn on a light and put my glasses on).

>He also said it is a big factor in the fibromyalgia,

>as the muscles are not allowed to repair, as you don't ever reach deep sleep.

Sounds reasonable. My cat having flashbacks doesn't make for deep sleep

either.

> And hence, the extreme fatigue, and muscle fatigue and pain. He is doing an

>informal study with his patients with EDS, by doing a sleep study on

>each/those willing, and so far each and every one of us have been found to

>have the episodes of low oxygen during sleep. Being a nurse, I was shocked

>to awaken, which I routinely do all night, and see very low heart rate, in

>the forties, and oxygen, at 68%!

Yes, I get that low, and sometimes lower, with a massive asthma attack.

Earns me a journey to hospital by ambulance.

>Normal oxygen is 98%-100% for the average

>individual, unless there is an underlying disorder, but once you hit 88%,

>most insurance companies use that for criteria for supplying oxygen. So now

>I don't know how I will travel with oxygen, for the conference, but will

>figure that out later, I can probably get some feedback from the oxygen

>company.

If you are flying, some will carry you and your oxygen. I have never

needed to do so, so I don't have any details, I'm afraid. I can't afford

to come to the conference and may be recovering from surgery anyway.

> So, ask him about this, as all it takes is a simple overnight pulse

>ox test.

There is probably a waiting list for such tests. One of the joys of a

national health service. Waiting lists for everything.

Thank you for the suggestions, though.

--

Fuller

Winchester, England

HEDS (VEDS overlay), FMS, OA, IBS, lumbar scoliosis, tinnitus, some hearing

loss, stomach problems, chronic depression, multiple allergies, asthma....

Please excuse any typos or odd phrases. I am talking to the Dragon.

[Guest guest]

Indeed I have that same problem, this topic hit the newsgroup not so long

ago, and the response was pretty noteable.

I wish I could give you an answer as to why so many IgAN sufferers feel so

fatigued so much of the time, but I'm not a doctor. My tiredness has been a

big part of me ever since I was at high school! I could sleep for days, and

can remember one weekend, back when I was around 17 or so where I went to

bed on Friday night, and didn't really get up properly until the Sunday.

This isn't normal. It isn't that I didn't want to get up, it isn't that I

wanted to stay in bed, but I was tired enough not to be bothered about

sleeping some more, so I just kinda stayed there. It isn't like a lazy

light sleeping either, I'm normally out for the count. A funny story was my

third day at university, where my parents would ring me to wake me, since my

alarm clock never worked, and they called and called, and eventually called

the resident sercurity who came to pretty juch drag me out of bed.

I too have spoken to the doctors about this, and its hard to get a

sympathetic ear. Probably, as a student its what they expect of me, but it

can seriously mess up your life if it gets out of control. I try not to let

it though, so when I've got the energy to do something, I'll do it well, and

put my all into it. Untill someone gives me something to help my tiredness,

I'm not going to let it effect me too much. Easier said than done some of

the time though, but its just one of those things.

BTW, I am only 20, so as young as yourself, and also in good health, I like

to think, so there has to be a common cause between us bunch, I'm sure of

it, its just pinpointing thats hard.

I'm sure will have some sympathy for you too, so listen out.

Best wishes

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

Hi, I'm a 30 yo male diagnosed 4 years ago after biopsy. I can relate with

you. I stay exhausted most of the time. I'm lucky that I work in a family

business, because I spend alot of time resting at home.

I take Vasotec, Avalide, Toprol, and Lopid to control blood pressure &

cholesterol. Neph says that none of the meds should cause exhaustion. I know

that I'm not imagining things, because I stay weak and tired all of the time.

I have always been very active until the past year when I started feeling so

tired. I've even quit drinking alcohol to try to regain energy, but that really

hasn't made a difference. Taking multi-vitamins(Wal Mart brand) has helped some.

huntmetx wrote: I was diagnosed with IgAN in

October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

Hi Welcome to the group.

You have described in your message probably how most of us in the group

feel, fatigue. I can totally relate to you, especially the shopping

bit. Your Nephrologist I am afraid to say is tripping out the same line

that many of us have heard along the way, i.e. that fatigue has nothing

to do with IGAN..personally I think they are WRONG! But that said, I

guess it is very difficult for them to come with the answers we so

strongly desire.

I too have been checked out via all tests for fatigue, and the latest

batch came back clear, i.e. MS, MND, Menopausal problems. I am however

anaemic and this has exacerbated the fatigue. It doesn't take rocket

science to figure out, that if so many of us are complaining about this,

could there not be a connection. My Neph to give him his due, has not

dissed it completely, he admitted that he has many patients not only

with IGAN, but similar who complain about this.

My message to Nephs come on, get a grip on this, do some active

listening and do some research into this (money permitting of course

!!!!).

I don't think it is wise to just stop taking your ace inhibitors,

however bad they make you feel, you have been prescribed these for a

reason, so please do check this out with your medics, for your health's

sake.

Best wishes

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

Hi

Indeed I do, great sympathy. In fact hearing so many of us complaining

of this, has now made me determined to get on my soap box LOL!!!! My GP

is an excellent listener, and he has been very concerned about my

exhaustion, not only does he believe me, he has witnessed it. When I

get so fatigued, my joints ache, and are visibly less mobile, yet all

the tests to rule out other problems, as I have outlined have come back

clear. I too can describe the feeling, it is not the sleepy type of

feeling, it is a heavy eyed, heavy limbed, completely drained feeling,

and even if I just rest for an hour, I do feel better. As soon as my

head hits the pillow, I am asleep. At 40 I find this most frustrating,

because up to diagnosis I was an active person, keen horse rider, keen

aerobics, dog walker, blah blah. Now I manage light swimming, and

aquarobics but am totally wiped out after it. Admittedly I do have

other problems, but I suffered these before IGAN, and was never

fatigued, so ummmm hello anyone seeing the connection yet!!!!

Now I am due to see my GP in 10 days, and I will ask him to investigate

this further (I pay for my treatment, so he has no problem with it?), I

will also get my Nephrologist who I see in May to commit himself a bit

more to looking into to this, though to be fair, he is a busy man, but

he does listen. I will even offer myself again for any trials, that

usually gets the attention, especially if you make no charge !!!!

Obviously this will all take time, if you are not UK based, you will

probably know that our NHS hospitals are under terrible pressure at this

time, and ok I have private care, but not for trials, nor my Neph, I see

him for free!!!

Watch this space, this a gal on a mission.

Oh and by the way, I take Vitamin E, Zinc Supplement, Flaxseed,

Echinacea (all with medical approval I hasten to add).

Best wishes

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

<< For those who may not know or remember, it's now believed by many experts

that HSP and IgAN are two sides of the same coin, >>

ok, I am clueless... what is HSP?

Katisha

[Guest guest]

I feel a lot less fatigued than six months ago. I take a multivitamin (Dr’s

orders), take a half hour walk every day, meditate every day, have a massage

once a month and attempt to get good sleep (not always easy). I also take a

few moments out in the sun when I can (which is easier when you live in

Australia). The main differences in my lifestyle in Australia as opposed to

London are the sunshine (does anyone know what Vitamin D is good for?),

fresher air, fresher organic vegetables from the market, and a more positive

outlook. My new nephrologist’s attitude is more positive than the London

one which makes a huge difference as I don’t feel like I am fighting him

every inch of the way as well, and I don’t feel “terminal” anymore. When

you look at your lifestyle, you may be able to find little things to change

that can make a huge difference over time. Change the every day products

that you use, maybe adding scented candles and other little things that make

you feel less deathly, taking a little exercise and gradually rebuilding

your stamina, renewing your relationship with the god of your choice. Do

the Oprah thing and make time for yourself!

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

I was diagnosed with IgAN two and a half years ago. About 2 months after

diagnosis, I became so exhausted that I could barely function. My

hematocrit was 27 at that time so I began Epoetin therapy, which has worked

very well. I inject 5,000 units per week to maintain a hematocrit of 36. I

haven't noticed any side effects from the ace inhibitor, although the beta

blocker does cause a bit of lethargy. Hope this info helps!

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

Hi

Ok rub it in, so you have sunshine LOL!!!! Glad to hear that you are

doing better , what a difference a few months can make eh.

Vitamin D promotes retention and absorption of calcium and phosphorus,

primarily in the bones. Too much vitamin D may have the opposite effect

of taking calcium from the bones and depositing it in the heart or

lungs, reducing their function. Because vitamin D is essential for the

body's utilization of calcium, a deficiency may result in severe loss of

calcium and consequently a softening and weakening of bones. Like most

vitamins, vitamin D may be obtained in the recommended amount with a

well-balanced diet, including some enriched or fortified foods. In

addition, the body manufactures vitamin D when exposed to sunshine, and

it is recommended people get 10 to 15 minutes of sunshine 3 times a

week, so your little regime is spot on gal.

As for the Oprah thing, totally agree, and while we are on the subject

of her, she has a Life Strategist Dr Phil McGraw, I really rate this

guy, and he has certainly change my life and attitude since reading his

books, and doing his workshop. I guess everyone finds their own way

eventually.

Keep in touch ok.

Best wishes

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

I think it is related...I've found fatigue after playing tennis for awhile,

or cutting the lawn. I also find it increasingly hard to get out of bed in

the morning. It also may be related to the blood pressure meds, I'm on a

beta blocker, and cardizem cd for that.

don

from land

fatigue

>I was diagnosed with IgAN in October and am always tired. I am not

>just tired from a stressful day or just tired on occasion, but am

>totally exausted all the time. If I go shopping for an hour or so it

>takes me two days to recover, I asked my nephrologist if it was

>because of the IgAN and he said no it wasn't related and that the

>only affects of IgAN that I should notice is blood in my urine. I've

>been to my general practioner and my gynocologist and they can't find

>any thing wrong with me. I am 27 years old and am in perfect health

>other than the IgAN, is my nephrologist wrong, can IgAN cause such

>fatigue? I don't even take the ace inhibitor the dr. precscribed for

>me because it makes me so weak and tired that I can't even get out of

>bed. I've tried everthing that I could think of to increase my

>energy level, even yoga and meditation, but nothing seems to work.

>Do you have any suggestions or does anyone else have the same problem?

>

>

>

[Guest guest]

Ok, here is my view on this. Now, those of you who know me know that I'm

generally not quick to dismiss the official medical line, however, with

fatigue, I do think there is a good possibility that they are all wrong. For

one thing, it's just too common among too many patients that I've become

familiar with over the years, and second, I can relate to virtually every

story that some of you have posted - especially J.'s. I know that I've

had fatigue very much like he described in his message since my 20's, when I

was first diagnosed with blood in my urine.

Technically, the nephrologists are right I think, in that there is nothing

special about the IgAN in the kidneys that would cause this kind of fatigue

in people who have only mild, chronic IgAN. We're not talking about people

who are anemic at that point, nor do they spill enough blood and/or protein

to cause fatigue.

My theory - and it's just that, a *theory* - is that the fatigue, like the

very common abdominal pain, joint pain and rashes, is caused not be the IgAN

itself, but by the whole immune disorder which somehow results in IgA being

deposited in the kidneys. I think it's a symptom that is very easily

dismissed, but it may very well be on the continuum between HSP and IgAN.

For those who may not know or remember, it's now believed by many experts

that HSP and IgAN are two sides of the same coin, that is, IgAN is HSP with

only the renal manifestation. More and more, I think that in some people,

perhaps many, some of the other HSP symptoms occasionally break through, but

may simply not be recognized as such. Generalized fatigue may be one of

them.

Right. So much for my pet theory. As for the fatigue itself, personally, I

don't think it's the sort of fatigue that a person can just fight through

all the time. I have always taken a Zen-like view of this: " When you're

hungry, eat. When you're tired, rest. "

Pierre

[Guest guest]

Re: fatigue

>

> Hi, I'm a 30 yo male diagnosed 4 years ago after biopsy. I can relate

with you. I stay exhausted most of the time. I'm lucky that I work in a

family business, because I spend alot of time resting at home.

> I take Vasotec, Avalide, Toprol, and Lopid to control blood pressure &

cholesterol. Neph says that none of the meds should cause exhaustion. I know

that I'm not imagining things, because I stay weak and tired all of the

time.

> I have always been very active until the past year when I started feeling

so tired. I've even quit drinking alcohol to try to regain energy, but that

really hasn't made a difference. Taking multi-vitamins(Wal Mart brand) has

helped some.

Most of the doctors who tell their patients that BP meds won't cause fatigue

and that run down feeling probably have never taken any BP meds themselves.

There is no doubt about it, any BP med can cause fatigue, and you are on 3

of them. On the positive side, you may gradually get over it, as your body

adjusts. I know BP meds have been a tough road for me over the past dozen

years. Of course, without them, I would have been walking around with BP

like 200/120, so, if you have to take them, you have to take them, fatigue

or no fatigue.

Pierre

[Guest guest]

Hi Diane. Wow! A hematocrit of 27 would make anyone feel exhausted. It does

happen, but still, it's a bit unusual for that to happen with IgAN until

more advanced renal failure sets in. How far along are you in terms of serum

creatinine or kidney function?

Pierre

RE: fatigue

> I was diagnosed with IgAN two and a half years ago. About 2 months after

> diagnosis, I became so exhausted that I could barely function. My

> hematocrit was 27 at that time so I began Epoetin therapy, which has

worked

> very well. I inject 5,000 units per week to maintain a hematocrit of 36.

I

> haven't noticed any side effects from the ace inhibitor, although the beta

> blocker does cause a bit of lethargy. Hope this info helps!

>

[Guest guest]

I'm not saying this is the case, but one thing you have to be aware of is

that some BP meds can not only cause fatigue, but also a bit of depression.

Beta blockers in particular are noted for that. Just something to watch out

for.

Pierre

Re: fatigue

> I think it is related...I've found fatigue after playing tennis for

awhile,

> or cutting the lawn. I also find it increasingly hard to get out of bed

in

> the morning. It also may be related to the blood pressure meds, I'm on a

> beta blocker, and cardizem cd for that.

>

> don

[Guest guest]

HSP is short for Henoch-Schonlein purpura. It's an immune system disorder in

which the renal effects in the kidneys are indistinguishable from those of

IgAN.

Pierre

Re: fatigue

>

>

>

> << For those who may not know or remember, it's now believed by many

experts

> that HSP and IgAN are two sides of the same coin, >>

>

> ok, I am clueless... what is HSP?

> Katisha

>

>

>

[Guest guest]

Diane,

I am aneamic and take 10,000 units per week of Eprex by self injection.

I didn't notice much at first but 4 weeks into the therapy, I am not as tired.It

has made a difference for me too.

Derrick

Sydney, Australia

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

Hi Pierre,

I'm so happy to have found this group -- it's wonderful to communicate with

others who have the same disease! Here's my story. Three years ago, during

a routine physical, blood was found in my urine and my BP was quite high (it

was normally very low). A few weeks later I had an episode of gross

hematuria. Tests revealed nothing. I am fortunate to have a very diligent

nurse practitioner who checked my urine regularly after that. Three months

after that, protein was found in my urine, my serum creatinine was 1.8, and

my NP referred me to a nephrologist, who did a biopsy and diagnosed the

IgAN. At that point, my kidney function was 33%, my prognosis poor, and I

was given 3 to 6 months before I'd need a transplant or go on dialysis. I

went through the hoops at the transplant clinic here in Seattle and was

approved for a transplant when it becomes necessary. My nephrologist

prescribed a lot of medication at that time -- BP meds, Rocaltrol, sodium

bicarb, vitamins, quinine for leg cramps. I became anemic shortly after

that, and started the Epo therapy. Well, my kidneys haven't failed yet! I

had a check-up last week. My creatinine went from 2.4 to 2.6, which isn't a

huge jump. The serum creatinine has been rising very slowly since my

diagnosis; my neph calls me his " miracle patient. " Even with the Epo

therapy, I do tire easily, but I joined a gym earlier this year and work out

regularly which has helped a lot. My BP has gone down, so my neph wants me

to go off the Labetalol and see whether I can keep my BP below 135/85. I

checked it last night and it was 165/91 so I'm not so sure that going off

the Labetalol is going to work. Anyway, I'm optimistic since my kidneys

haven't failed as rapidly as predicted. Thanks for your message; again,

it's great to be able to share info with others in the same boat! Have a

wonderful day!

Diane

Re: fatigue

Hi Diane. Wow! A hematocrit of 27 would make anyone feel exhausted. It does

happen, but still, it's a bit unusual for that to happen with IgAN until

more advanced renal failure sets in. How far along are you in terms of serum

creatinine or kidney function?

Pierre

RE: fatigue

> I was diagnosed with IgAN two and a half years ago. About 2 months after

> diagnosis, I became so exhausted that I could barely function. My

> hematocrit was 27 at that time so I began Epoetin therapy, which has

worked

> very well. I inject 5,000 units per week to maintain a hematocrit of 36.

I

> haven't noticed any side effects from the ace inhibitor, although the beta

> blocker does cause a bit of lethargy. Hope this info helps!

>

[Guest guest]

I have to say Pierre you must get extremely fatigued answering everyone's

questions....how do you do it. I agree with what you say about the meds and

fatigue. I thought that now i had meds to start controlling my condition i would

start to get more energy. I've lost 3 stone and have people say to me ...wow,

you must feel fantastic, and you know what ...i don't and then i'll go home and

feel depressed, when i should feel happy! I know i have a lot to deal with

lately (father in law with teminal cancer, a son with autism, a teenager and a

husband that is not overly supportive!) But i do think it's the med's that is

making me feel like i do. I'm always forgetting things as well and feel like i'm

walking around in a daze.

I just hope it doesn't last forever!

kaz

Re: fatigue

> I think it is related...I've found fatigue after playing tennis for

awhile,

> or cutting the lawn. I also find it increasingly hard to get out of bed

in

> the morning. It also may be related to the blood pressure meds, I'm on a

> beta blocker, and cardizem cd for that.

>

> don

[Guest guest]

Pierrie, what's HSP?

Jeanie

[Guest guest]

Diane,

My last haematocrit was at 0.34, not as low as yours, and I felt

tired, I do not know what it is at present, tests are due in about 1 month but

it has certainly made a difference already in my general well being.

Derrick

Sydney, Australia

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

When I was first diagnosed (pre-biopsy) at age 17, I worked very hard at a

carwash while going to high school. I had so much energy, I would come home and

wash my own car, mow the yard, etc after work. I didn't notice any fatigue until

the disease progressed.

Marty

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

[Guest guest]

Hi Kaz.

Don't worry about me, it gives me something to do besides watching the news

on CNN : )

I'm just glad to be able to share my experiences with this disease.

You know, some people I know very well (no kidney disease) take a number of

BP meds and feel great, no problems at all. Others have all kinds of

problems with them. As the saying goes, with BP meds, the medication side

effects won't kill you, but the high blood pressure will.

One thing to watch out for is depression. BP meds can do that. I can

certainly sympathize with having family problems that don't help, though.

Pierre

Re: fatigue

>

>

> > I think it is related...I've found fatigue after playing tennis for

> awhile,

> > or cutting the lawn. I also find it increasingly hard to get out of

bed

> in

> > the morning. It also may be related to the blood pressure meds, I'm

on a

> > beta blocker, and cardizem cd for that.

> >

> > don

>

>

>

>

[Guest guest]

Hi Jeanie.

HENOCH-SCHOENLEIN PURPURA

http://www.icondata.com/health/pedbase/files/HENOCH-S.HTM

Pierre

Re: fatigue

> Pierrie, what's HSP?

>

> Jeanie

>

>

>