Alternative treatments etc. | Arthritis Information

 

Hi everyone,
I'm a new member. I was diagnosed with PMR about 3-4 years ago after suffering without diagnosis for about 2 years prior. I went on 10mg pred and was ecstatic, pain gone. I've been tapering over the 3-4 years and was down to 3mg and doing well. My doctor decided I should get off pred and prescribed Cymbalta an anti-depressant thought by some to help with pain. (there are no clinical studies that I could find). Although I usually suffer no side effects from meds I had many from Cymbalta and had to stop after 6 weeks. While taking Cym. I was still on 3 mg pred. When he took me off Cym. he told me to up the pred to 5mg for a week, them 4mg for a week and then back to 3mg. As soon as I was off the Cym. my PMR hit and I've been in pain since in spite of now taking 5 mg. Don't dare taper and worry I may have to go back up.
I guess my question to you all is, what are the long term effects of low dose prednisone? My Dr. doesn't seem to like questions and hasn't answered this for me. I was doing fine on 3mg and was considering going to 2mg. Now the whole process seems set back.
Also, is anyone familiar with any alternative treatments?
As far as nutrition goes I feel as though sugar makes it worse and lots of water seems to make it better. Thanks in advance for any help.
Hi Coco, Welcome to the predheads. Your story sounds very familiar. I
started at 20, went down to 10, back up to 15, down to 12, back up to
15, and very sloooowly down to 13, and holding at the moment. At this
level the pain and stiffness are bearable, but the fatigue is high. It's a
choice between the lesser of two evils. Somtimes I think the doctor's don't
know much more than we do. I agree that sugar makes it worse and lots
of water seems to make it better. That might be a sign of possible
diabetes.   I do see a massage therapist for half hour sessions twice a
week, and feel that it is very helpful, maybe the reason that the pain and
stiffness are reduced. I am also thinking about trying acupuncture.

Stay with us, there is a lot of help here, especially if your doctor doesn't
answer questions. A pox on him!!

Libeth

I am finding that sugar does make it worse.  I am having a bad fatigue day today along with more stiffness than usual.  Really bad stiffness. 

Did I over do it? or was it sugar?  The day before yesterday, I baked a birthday cake and yesterday made a casserole and took it all about 30 miles away for a birthday party for my nine year old great nephew.  I left and two p.m., and was back home by about 9:30 p.m.

I ate birthday cake and ice cream along with the casserole of hamburger, potatoes, carrots, tomatoes, green beans, onion, celery and chili seasonings.  It was really good and I had a second helping.   I think it was the cake and ice cream, since I've eaten casserole before and it didn't seem to bother me any.  Maybe I ate too much.

Your suggestion of more water is helpful.  I do drink about 60 ozs of water now per day.  Maybe I should increase it.

It is interesting to learn that others are thinking sugar is not good for us.   I kinda got that idea a couple weeks ago when I had eaten a sugary dessert and within three hours, my keens felt swollen.  I didn't think a bit of angel food cake with sugar free pudding frosting and ice cream would be that bad.  But maybe  the combination of visiting and eating was just too much for one day.  I had been doing pretty well, and now just don't know...other than maybe the sugar. Mary 

Welcome Coco,

I'm so sorry to hear about your setback.  Welcome to the group, you'll find many helpful, caring people here.

I too suffered with PMR for 2 years before getting a diagnosis.  My GP never listened and didn't have a clue.  I was recommended to go to an Internist by a friend a couple of months ago and she was a life saver.

What kind of doctor are you seeing?  I hope it's a Rheumatoligist.  This disease is very tricky and you want someone who is familiar with treating it. Don't be afraid to get a second opinion. Not all doctors are good at all things.

I have tried some natural remedies that my sister recommended (she is a health nut to put it mildly) including the dreaded vinegar and honey torture, but nothing has helped. I'm going to try going to a massage therapist for awhile, as my doc recommended it.  I think we develop a lot of tension in our muscles from dealing with the pain long term. I do agree with eating healthy and staying as active as possible.  You want to keep your muscles alive and well until this horid experience passes.

Again, welcome and don't hesitate to ask if you need help. One of us might have an answer for you.  We all have commonalities and differences, this disease can be extremely frustrating at times, well most of the time I guess.

You take care!

Kathy

 

Hi All,
Many of you know from my previous posts that I searched alternative
treatments. I have used acupuncture VERY successfully for other
problems... the PMR was different. It took the pain from PMR from sharp
to duller, but definately did NOT make it go away. Neither the
acupuncturist nor I could figure out why it wasn't working.

She (the acupuncturist) has been telling me for a long time that sugar is
POISON to my body. I stopped eating any sugar the same wekk I started
on pred - who knows how much of which lessened the pain? Well, the last
three days I have had sugar and wine (the worst sugar!) and guess what? I
hurt today AND have a migraine tonight (1st in months!).. Off the sugar
tomorrow!!!

BTW, haven't found anyone who can tell me anything about any
alternative PMR tx except diet - stay away from nightshades, sugar, red
meat & dairy -- oh yeah, and Gluten... I eat air and drink lots of water [:^
(] Hi everyone,
Thank you for your responses. I really appreciate them. A question I meant to ask . . . does anyone know what is inflamed? I know it's not joints. Is it muscles? Somewhere I read that it is an inflammation of the blood vessels of the muscles. I have a weird theory which might explain why they are trying to treat it with neurological meds such as antidepressants. Can it be an inflammation of the nerves??? I am seeing a rheumatologist and I think he's probably a good doctor but he has a bad bedside manner. Just wants me to do as he says. I think I'm going to try another one. The thing I can't understand is why it got worse after taking the Cymbalta for 6 weeks because during that time I didn't decrease my standard 3mg dose of pred. I had no pain on the 3mg. I'm so upset that this happened because I felt I was getting very close to being cured(or in remission). I'm now taking 5mg and have quite a lot of pain and fear I will have to go back up. Do you all think that PMR causes depression or do you think that you start to feel down and depressed because of the pain? I guess it doesn't really matter. Thanks again. I will continue to read and try to help with my experiences and thoughts.
Coco, Lot of good questions. My dr's have said the sugar issue is related
to the role of the adrenals in sugar use & production (glucose). It is very
complicated interaction, but after hearing it from 2 doctors, it makes
sense to me that sugar causes so many of us such pain.

I have not seen this in articles, but a doctor friend of mine told me last
week that PMR is a "connective tissue" disease. Again, I think it makes
sense since the joints and muscles hurt.

Depression - Chicken or egg??? I think it is hard to seperate what is what.
I was certainly very depressed all last year while in pain. The depression
has eased some with the relief from the pred this summer. However, is it
the pain causing the depression? Was it just winter in Maine which is
extremely dark and gray & 1/2 the population has SAD? Is it actually a
symptom of the disease? I would love to hear what others think.
pgr

I absolutely think the depression is because of the pain. I was always very happy go lucky galll than when the PMR hit I got so angry than sad and depressed asking myself "why me at thes young age?" Now the PMR has gone (after the second bout) and I am my happy self again. Guaranteed than when your PMR is gone  the depression goes out the window!

Coco re effects of low dose pred. They say that as long as you stay under 7mgs the long lasting effects are minimal.

marianne195239355.6281018518I agree with Marianne that the depression is caused by constant pain. When you hurt all the time and can't do the things you used to do, of course you're going to get depressed. And then when no one can tell you what is wrong with you or they don't believe that you could be in as much pain as you say you are, that can make you even more depressed. It's a vicious cycle. Coco, I don't know which planet I was on when you first posted, but I missed it somehow. Anyhow, welcome to our group, I hope you find it as helpful as I have done. I am interested in your questions about what exactly is inflamed, I have wondered the same thing many times. Some articles say muscles, some say blood vessels. I also wonder about nerves and nerve endings, as some of the pain I get has that nerve pain quality about it. As for depression, it definitely comes from having an illness that depletes energy, reduces your activity and severely curtails your lifestyle. Steady pain, even mild pain, that is unrelenting is exhausting. I hope you can get a more helpful and understanding doctor soon. Stay with us!

Sugar! I'm loaded with it and feel "Hellish" and now I"m beginning to understand why. My doctor never mentioned this or many of the other little things I'm learning about here. Partly, I think is because she *doesn't know* and partly because she's so busy trying to get me pushed out the door and on to the next patient. You people are the best!

 

And COCO...welcome! You'll learn so much here and will get answers you can't find any place else.

DebJ39364.8814236111

I have been off of sugar since Friday and feel so much better.  My being tired all the time has gotten better.  I am drinking a lot of water now.  I never drink pop or anything sweet, but a year ago I got hooked on Propel and was drinking 3 large botles a day.  Sometimes I wonder if that is what set me into a spin.

As far a depression,   I injured myself at work in 97 and fought workers comp for 2 years before they did anything.  I was on Prozac in 2000 and was doing good. Then this PMR hit is Feb and was diagnoised in April.  Felt my antidepressant was not working, so they changed me to Cymbalta also.  I think it is starting to work.  No side afects yet.

I have my blood test in a couple of weeks and can't wait to see if there is a change.  Thanks for all your help.  Geri

Geri, glad you are feeling better. Sugar seems to be the 1 real commonality. I
ate some over the weekend, but i am off again now. I will nnot go back to
that addiction if I can help it!
pgr

There are clear links between depression and chronic illness and quite a lot of interesting research into it. (try googling!).

I have had clinical depression without being chronically ill and now have a chronic illness and am sometimes depressed. I experience it quite differently - as I can recognise the difference in feelings. So I can tell when it is the chronic illness depressing me and when it is depression depressing me, if you see what I mean. Both are equally valid states of depression, but have different flavours.

I suspect there needs to be lots more research into all this and that it may be quite hard diagnostically to distinguish. Some very recent research has been published showing depression can be more damaging than chronic illness.

Long ramble, but what I'm leading up to is, I think there's a very tanlged background (and muddled thinking even amongst medics)about depression and chronic illnesses.

Chico - I don't know if your doctor was primarily treating depression or treating depression as a side effect of the PMR or even maybe following a belief that chronic illnesses can be cured by mind over matter. I am just sorry, that whatever the intention, it has set you back.

I'm interested in the sugar angle. My mother certainly eats a lot of sugar - I shall gladly pass this tip onto her and see if she has noticed a sugar effect.

I read your posting with great interest. I have also experienced the two
depressions, and your description fits perfectly. The PMR depression is
for a reason, and the chronic depression is without reason. Medication
seems to be only a partial answer, and the side effects add to the
problem. I have been exploring other solutions, such as avoiding sugar
and other foods that might contribute. Diet could be a large part of the
issue. Also, maintaining some level of physical activity, in spite of the
pain (very hard to do). I force myself to do it, because otherwise it all gets
worse. I see a massage therapist twice a week for half hour sesssions, it
does seem to help, and I am considering seeing an acupuncturist. I am
currently not seeing either a rheumy or a PCP, as I am very disillussioned
about what they can do. Since all the tests I have taken do not indicate a
major disfunction, I am looking at the the ways I can change everyday
living, and not even thinking about when will I get better. One day at a
time.


     LibethLibeth,
I know you have had a rough time findig the right doctors, and you know
I am a strong believer in alternative treatment. However, I am concerned if
you are on pred without sme guidance from a doctor. Are you looking for
a new one? Keep us up to date.

I also think there is a difference in the depressions. And Griffin is right,
there is a now a lot of research that says chronic depression can be
responsible for many other things - I can't think of the name of it now,
but the same guy who wrote "Prozac Nation" wrote a book about the
latest research on depression and talks about the effects on premature
aging and many illnesses. I recommend it for anyone who has chronic
long term depression, as opposed to this stuff that goes with chronic
pain. Both are depression, both are serious, they are just different.
pgrHi everyone,
Thank you all for the great feedback. After I quit the Cymbalta my doctor gave me a prescription for Lyrica which I guess is a fairly new drug similar to Gabapentin and Neurontin. He called it in to the pharmacy so I didn't have a chance to discuss it with him. I had started to feel less pain so decided to hold off taking it (I'm so sick of medications). Has anyone out there taken it? I'm also afraid of new drugs. I try to stick with one that have been around. I'm currently having a setback (lots of stiffness and pain) and I know I've been eating too many sweets and not drinking water. I'm going to try hard this week to improve those things and see what happens. I asked my pharmacist (who sometimes I feel knows more than my rheumatologist) if he had any idea why quitting Cymbalta (while continuing my regular pred the whole time on Cymbalta) would cause such a set back. He thinks it was caused by withdrawal from the Cym. Maybe when the CYm. is totally out of my system (which I guess can take a long time) I will improve??? Who knows? Thank you all.
Hi Coco

Its interesting reading about the sugar.  The more pain I feel the more I seem to crave sugar ..... hmmmmmmmm.  I'm new here too and am looking for something to make my pain go away.  Getting tired of dealing with the cronic pain.  I'm gonna try to stay away from sugar and see how that goes.  I'm not very good with dicipline, so that makes me nervous, not to mention the holidays arround the corner!!

Hope you're doing better now!

Celena

Hi Celena,

   Are you on prednisone or any other medications?  What's your doctor saying about the pain?

As far as discipline goes, have no fear.  We've got a very effective whip-wielder in PRG555, or boat's  Star Wars reject  robot.  You want discipline...she'll give you discipline!  But first, come up on the aft deck and tell us what's going on.

Gee Whiz!  I've got to stop typing in the dark.  That's PGR555, the third cousin of R2D2 of Star Wars fame.  PRG555 is a foiled identity thief.  And or should be our.  Sorry for any confusion.  I don't like to get our whip-wielder excited.  Especially critical when I change her batteries!lol! The whip wilder needs some discipline herself today! Decided it was a
sugar day and made the conscious decision to to allow myself sugar today...
Had A LOT!!! Lets see how tomorrow goes..........

Batteries must really need changing!

and btw... R2D2 is my 8th cousin/// or was it 11th/
pgrI definately believe sugar is a major issue......I gave up sugar and salt when starting on the pred. I had lost 20 lbs. before my DX (the weight I had gained 10 years earlier when I quit smoking) and was determined not to gain it back. That was the ONE good thing that came of all this. I feel I am doing well day to day and with tapering. I have had a couple of minor flares but I can almost relate them to STRESS !  Haven't given up the caffiene...we all need a few vices!pgr555, don't be too hard on yourself.   Take one day at a time.  I bought myself some low carb chocolate bars with no sugar.  They are not bad and gives  me what I need for a sweet tooth.  I am doing good on the no sugar diet.  I am almost hyper the last couple of days.  The rain is coming, and my neck and shoulder hurt.  I want to start to taper my pred this next week.  best of luck to you. geriI RARELY eat sugar. Yesterday was a conscious decision, so I am not being
too hard on myself... But I didn't sleep last night & felt really awful. My neck
is stiff today and I am really tired. I ate very healthy for breakfast today &
will not have any more sugar. I am glad I can get back on track. There was a
time when a day like that would have started a landslide that took months to
get off the sugar.

It is amazing to me how strongly I react to sugar & I won;t make the same
decision again for a while... But ya know... everyonce in a while it is worth it!

and by the way - the cadence is too slow!!! Row faster please!
My whip is at the ready!
pgr
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