Kidney Failure - Dave or anyone .. a question on Muscles/joint pain?

Author

Dave or anyone .. a question on Muscles/joint pain?

jojobanana

2006-10-08, 4:29 pm

Hi Dave!

Hope you don't mind but iv'e been following the debate largely between
yoursefl and Jason on Low/high protein diets, ..unfortunatley I don't
know enough to comment myself ... I haven't even had my final
diagnosis yet!! I'm getting it tomorrow .. it had either minimal
change disease or FSGS on my hospital discharge sheet? From what I
have read I have convinced myself I could have anything .. i'm even a
fully fledged member of Yahoo's iga-nephropathy group ... :-) ???!!!

Anyway ... the question I was hoping you may be able to shed some light
on is this ...

over the 4/5 days i have been waking with terrible pain starting in my
right knee spreadign down my leg .. it has since moved to the left leg
and now its in both. it seems that lying flat in bed after so many
hours of sleeping (if u can call it that - between trips to the toilet)
the pain wakes me up ... by the time i get up it can be excruciating..
the other day it was in both legs.. i coudld hardly stand.. it felt
like what i woudl imagine bad arthritis to feel like but also down my
legs muscles.. my groin area feels a little strained as well. I am on
60 mg Prednisolone and have been taking these since roughly the 6-10th
of September. Two group members from the IGA lot made some interesting
gpoints... 1) they are anti-inflammitaries so it shouldn't be the
Prednisolone? and 2) It could be a sign i am dehyrdated as these
symptoms also presented themself to one of the other group members? My
doctor thought i had a possible blood clot but by the time I arrived at
the surgery... the pain had eased and she said my muscles/leg were soft
and there was no sign of anything.. (she didn't have a clue in other
words)! I am hoping the consultant will shed light on this tomorrow
however... I am wondering if my diet is playing a part in this.. maybe
eating too much chicken... protein... i mean i don't think so... i know
my muscles really have wasted a way a bit.. after not eating much for 2
weeks prior to hospital stay ... then being in hospital for 2 weeks not
eating much casue the renal choices sucked - in fact there were hardly
any choices!!! For me (which is somebody that loves their food) and
also now has the Steroid induced munchies to battle with... i find my
body craves... chicken and certain things .. particulary Protein...

Is this not a classic sign in general that when your body craves
something it DOESN'T need it??
Or... Just that it does... but only take in moderation? If I have to
watch my potassium, salt etc... althoguh now my Endema has gone ... and
i can't eat protein.. well I'd be as well being dead.. as what else is
there too eat?????

This is a long mail.. sorry.. but without giving you background its
difficult for you to advise. I know you had mentioned how your muscle
can waste away if you don't eat a certain amount of protein.. starts
eating itself ... is this maybe whats casuing my pain.. or is it my
mucsles are building themselves back up now that i'm eating more????
but why such pain??

Does anything spring to mind? And I am a 28 / female.... so its not
old age :-)

Thanks,
jo

Dave

2006-10-09, 8:27 am

I am not a doctor, so I wouldn't try to diagnose what is gong on. I
will give you some ideas though.

The first possibility is as you guessed. You are having trouble holding
down protein, and therefore are experiencing problems with the muscles
in your legs, as this is where these types of symptoms usually show up
first.

The next possibility is that you are anemic. When you don't have enough
red blood cells, yor muscles can be starved for oxygen, which leads to
cramping and pain. This usually occurs with physical exersion. It can
happen while you sleep from having Restless Legs Syndrome, a condition
that is common to ESRD patients, especially during stressful times.
Going into ESRD is extremely stressful. RLS causes the muscles in the
legs to twitch and tighten up, usually at the times you are trying to
rest the most. This makes it difficult to fall asleep. There are
prescription drugs that are quite effective in treating RLS. The old
fashioned way to treat it was with quinine, but studies over that last
several years have pointed to potential problems with continued use of
quinine other than occasionally. If you wanted to try it though, the
active ingredient in Tonic Water is quinine, just don't go overboard
with the liquids if you are having difficulty getting rid of fluids.

The fact that you said the pain began in your knee brings up another
possibility. The elevated Bili Urea Nitrogen (BUN) in the blood can
lead to crystals of Ureaic Acid in the joints, particularly in the
knees. This sometimes refered to as gout, but if in ESRD is not really,
just similar. This pain can spread to the nearby muscles as well.

As you stated, a blood clot is a possibility, although they usually
cause pain all the time. Dehydration is another possibility, but
unusual in ESRD patients. Most are Hyperhydrated. Also, the steroids
are likely to cause you to retain more fluid.

As to your craving protein, I experienced the same thing when I was
headed to ESRD, but eventually I couldn't even tolerate the smell of
high protein foods without getting sick to my stomach. Quite disturbing
to me as I too love my meat.

One question for you. How did you get rid of the edema that you
indicate you had? If you used dieretics, you very well may be deficient
in Potasium, Sodium or both. Bloodwork should eliminate this
possibility.

If in fact you are going into ESRD, you will be able to return to eating
high protein foods, within reason, once you have started dialysis or
have had a transplant. It may take time though, so please try to be
patient.

Good Luck,

I'll try to answer any questions you may have, just post them.

Dave

jojobanana

2006-10-09, 4:30 pm

Hi Dave,

Thanks for taking the time to read my mail & getting back to me!

My endema ... they gave me Diaretics in hospital for a bit but stopped
them after about 1 - 1 & 1/2 weeks I think as I was dehydrated or
something wasn't right - can't remember now?! it just went away itself
.... over a period of i'd say 4 weeks. I was 16 stone 3, leaving the
hospital on I think the 19th Sept and I got weighed today and am 12
stone 2!! I think near enough 2 stone in fluid and 2 stone weight loss
:-)

I got to meet my new consultant today (my first follow up since leaving
hospital) ... she took bloods today so i won't be able to find out how
my BUNS, potassium etc is until i see her again on the 30th of this
month. To be honest i might try and phone the department and find out
the results sooner.

The diagnosis wasn't as final as I kind of hoped it would be. I guess
it was relatively positive. On a scale with 'Minimal Change disease'
at one end and 'FSGS' at the other I am nearer the Minimal change
(which is seemingly the better outcome).. I can't help but think though
if there are signs of possible FSGS there now, then theres a good
chance it is that. Only after steroid treatment is reduced and stopped
will i know. If everything starts happening again within a short space
of time I think this highlights the likelyhood of it being FSGS. I
need to try and stay hopeful that I won'r relapse. Its as simple as
that really ... but being the type of person i am i like to know what
the possible outcomes are and get semi- knowledgeable with whats
happening to my body or might happen - and i might relapse!I

Thanks for the info you gave me... both the GP and the Consultant today
did not have a clue what the pain was in my legs/knees. In fact her
attitude towards it really dissapointed me. She offered no
reassurance/advice/concern in terms of dealing with it. Thankfully it
hasn't been too bad today and maybe it will settle down. I did pose
the question .. in 3 weeks when they try reducing the 60mg of
Prednisolone.. will there be any side effects to this... which she said
would be muscle/joint pains (possible) - thats why they need to reduce
in small amounts. Oh.. she did say that i may have small tears in my
muscles through the Steroids.. it may be this casuing the pain.
Although she also said if i had been on these steroids for 5 weeks...
then why are they causing me pain now? It must be something else she
said... but coudln't tell me what!!!

Until i get blood results i don't know if its anything to do with my
diet. I can eat proteins without feeling sick, my Urine tested today
showed only a very little protein and blood (which i think is good -
but this may just be the steroids)?!

I did read up on the whole Gout thing... but to be honest.. I don't
think its that. And then I was reading about Lupus and (Avascular
Necrosis - low blod flow injury causing death of bone to the joint)
...... I stopped reading at that point!!!!!!!!!!!!!

I will monitor the pain and see if it eases.... I am not going to get
paranoid and self diagnose myself with this and that. I will however
be demanding answers from someone if the pain doesn't eventually
subside though!

I guess its a waiting game for the time being - so that will be fun :-)

Hey ... how is your health just now? Are you keeping well at the
moment? The iga-nephropathy group on yahoo is a good group. I'm sure
your knowledge would be useful there ... they are a very
friendly/supportive group (amazing really) - and in my case when most
of the renal people i have seen so far have been as cold and unhelpful
as they have been ... it really has been a godsend to have the internet
and groups like this as a support network. Personally ... I really do
appreciate/need the support/advice/information we all share.

Take Care Dave and thanks again,
jo
xxx

Jason Johnson

2006-10-09, 4:30 pm

In article <1160402395.663213.86130@c28g2000cwb.googlegroups.com>,
"jojobanana" <jo78@hotmail.com> wrote:

Hi Dave,

Thanks for taking the time to read my mail & getting back to me!

My endema ... they gave me Diaretics in hospital for a bit but stopped
them after about 1 - 1 & 1/2 weeks I think as I was dehydrated or
something wasn't right - can't remember now?! it just went away itself
... over a period of i'd say 4 weeks. I was 16 stone 3, leaving the
hospital on I think the 19th Sept and I got weighed today and am 12
stone 2!! I think near enough 2 stone in fluid and 2 stone weight loss
:-)

I got to meet my new consultant today (my first follow up since leaving
hospital) ... she took bloods today so i won't be able to find out how
my BUNS, potassium etc is until i see her again on the 30th of this
month. To be honest i might try and phone the department and find out
the results sooner.

The diagnosis wasn't as final as I kind of hoped it would be. I guess
it was relatively positive. On a scale with 'Minimal Change disease'
at one end and 'FSGS' at the other I am nearer the Minimal change
(which is seemingly the better outcome).. I can't help but think though
if there are signs of possible FSGS there now, then theres a good
chance it is that. Only after steroid treatment is reduced and stopped
will i know. If everything starts happening again within a short space
of time I think this highlights the likelyhood of it being FSGS. I
need to try and stay hopeful that I won'r relapse. Its as simple as
that really ... but being the type of person i am i like to know what
the possible outcomes are and get semi- knowledgeable with whats
happening to my body or might happen - and i might relapse!I

Thanks for the info you gave me... both the GP and the Consultant today
did not have a clue what the pain was in my legs/knees. In fact her
attitude towards it really dissapointed me. She offered no
reassurance/advice/concern in terms of dealing with it. Thankfully it
hasn't been too bad today and maybe it will settle down. I did pose
the question .. in 3 weeks when they try reducing the 60mg of
Prednisolone.. will there be any side effects to this... which she said
would be muscle/joint pains (possible) - thats why they need to reduce
in small amounts. Oh.. she did say that i may have small tears in my
muscles through the Steroids.. it may be this casuing the pain.
Although she also said if i had been on these steroids for 5 weeks...
then why are they causing me pain now? It must be something else she
said... but coudln't tell me what!!!

Until i get blood results i don't know if its anything to do with my
diet. I can eat proteins without feeling sick, my Urine tested today
showed only a very little protein and blood (which i think is good -
but this may just be the steroids)?!

I did read up on the whole Gout thing... but to be honest.. I don't
think its that. And then I was reading about Lupus and (Avascular
Necrosis - low blod flow injury causing death of bone to the joint)
..... I stopped reading at that point!!!!!!!!!!!!!

I will monitor the pain and see if it eases.... I am not going to get
paranoid and self diagnose myself with this and that. I will however
be demanding answers from someone if the pain doesn't eventually
subside though!

I guess its a waiting game for the time being - so that will be fun :-)

Hey ... how is your health just now? Are you keeping well at the
moment? The iga-nephropathy group on yahoo is a good group. I'm sure
your knowledge would be useful there ... they are a very
friendly/supportive group (amazing really) - and in my case when most
of the renal people i have seen so far have been as cold and unhelpful
as they have been ... it really has been a godsend to have the internet
and groups like this as a support network. Personally ... I really do
appreciate/need the support/advice/information we all share.

Take Care Dave and thanks again,
jo
xxx

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

jo,
Dave gave you some excellent advice and he is probably correct. I am not a
doctor or an expert related to your medical problems.
If possible, try to get a copy of your blood test and urine test results.
Post any numbers that are outside the reference range.
Also, post these levels even if they are within the reference range:
carbon dioxide or CO2
albumin
globulin
Blood Urea Nitrogen or BUN
BUN/Creatinine Ratio or B/C
Alkaline Phosphatase or ALP
Creatinine
Red Blood Count or RBC
Hematocrit or HCT
Hemoglobin or HGB

On the urine test, let us know any readings that are outside the reference
range

My prayers are with you and I hope that your doctors are providing you
with the care that you need. Prior to your next conference with your
doctor or doctors, prepare a list of questions. I learned the hard way
that I have to write down the questions--otherwise--I forget to ask them.

I should note that the doctor may have given you a diuretic since you may
have been retaining sodium, water and/or potassium

May God Bless you,
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dave

2006-10-09, 9:33 pm

My health is excellent right now. I have dialysis for 8 hours 3 times a
week at a bloodflow rate of 400cc, which is close to what most patients
get in the daytime shorter treatments, so I am getting about twice the
normal dialysis. I haven't felt this well since long before I started
dialysis. For those who have experience with dialysis, on days I had
KT/V values of 1.3 to 1.4, or URR of 65-70. Now I have KT/V values of
2.9 to 3.5, or URR of 90-95%. Blood pressure never crashes during
treatment, recovery after treatment happens before I finish holding the
needle sites. No binder for phosphate, even have been advised to eat
more phosphate foods. Fluid restrictions have been relaxed a bit as now
have 8 hours to remove gains.

Sounds as if you may have a kidney problem, but not immediate threat.
Keep after the docs, never stop asking questions, and try to learn as
much as you can about the whole thing. Yes, it can be a bit scary
finding out all the possilities, but with proper knowledge, you have a
chance to minimize the effect on your life. When something happens,
take the attitude of "How do we overcome this", not "Whow is me".
You'll do better, and it will help the loved ones to cope as well, as
they are in this with you whether you or they know it or not. As I said
Knowledge is King. Also, don'y worry about what you have no control
over. It's wasted energy better used on what you can control.

I haven't been to the Yahoo group, but I may saunter over and take a
look. It's more difficult to find the time these days than it was in
the past. I have a business to run now, and it takes up much time.

Well, Good Luck. And keep posting.

Dave