How Are We Supposed to Feel?? | Arthritis Information

I keep expecting to feel better (back to normal) all the time, and am continually being disappointed. Am I just being unrealistic? When we treat PMR with prednisone, doesn't that suppress the inflammation so shouldn't we feel well again? (assuming we are on the correct dose). Even though my pred dose takes care of the stiffness and PMR pain, I still feel unwell in that the fatigue is still there and I just don't feel well. I need to rest every day, my appetite is poor, I am getting depressed as heck, and I think is this how it's going to be for the 1 or 2 years that they say PMR lasts for?

Many of the articles on PMR I have read cite case histories of patients who, once they are on pred, "return to full function". Well, I'm on about 50% function! Maybe I should be grateful for that? Maybe I am really fortunate that I am not in pain. Is PMR just about pain? Why, when I am free of the pain, do I still feel so awful? How do you all really feel?

Hi Chico

I'm pain free, and feel lucky about that as a lot of people still have a lot of
pain. However, I really have to pace myself or I feel ill. Walking is OK, but
anything using shoulders tires me out. I need 9 or 10 hours slepp a night
compared to the 6 I used to get. I have to plan my diary very carefully so
I don't do too much - and I hate having to do this, it's not how I have
lived. I retired 18 months ago, (before this started) and I know the I
couldn't have carried on working with PMR - I'd have been flat on my back
in a week.

So yes, I'm functionaing 'normally', but I'm doing a lot less than I was 2
years ago.

best wishes

MargaretHi Chico and Margaret, I am right there with you. The pain and stiffness
have subsided, although not completely gone, but the fatigue is there if not
worse. It seems to come in waves and when it hits I have to lie down, and
stay down for awhile. I try to walk with my dog to the post office every day,
the great distance of one mile, but that is about it, except for the daily
routine of living, absolute essentials only. These efforts used to take up
about 1/5 of my time and energy. I feel like a slug crawling across the
landscape.

LibethChico, I still have a lot of pain, bur am able to function. It's been over 1 1/2 years. They try to keep us at a place where the pain is bearable, so our bodies will start to produce it's own stuff! I think severe depression from time to time is normal for most of us. I know, Rose, Georgianna and myself have been in the pits several times, but when the body starts to feel a little better, the mind follows. I think iti's just normal. Georgianna was having a terrible time a couple of weeks ago. Where are you, Georgianna? What did your tests reveal?Chico, Libeth & Margaret,
I am right with you. I have very little pain at this point unless I really overdo,
but my body feels like it weighs 2 tons and won't move if I do anywhere
close to a normal day. I had that 3 days in bed after normal activity 2 weeks
ago. I have actually been wondering if it is the PMR or the effects of the
speed from the pred? Like your body crashes while your mind races? It is
really helpful to hear you all feel the same as most people seem to think the
pain is the primary symptom.
PGR passes the energy drinks to her friends!

Hi all ladies!

I am also tired from time to time. I am male and 70 and I am on 3 mg but when I was on 5, it took me a year to get down below to 4, because I tapered too fast and had more fatigue. Now I take it easy and haven´t had to go back up a single time after starting to taper 0.5 mg per month. I also have to take it easy when walking, but I have just been on a trip to Stockholm as tourist and could do all the walking - but taking a break every once in a while. I think that if you are "over ambitious" and try to taper too fast, you are punished and it all takes much longer.

Ragnar

Hi Swede, Good to hear from you. I am having a really hard time getting below 7 mg. I think it may take several trys for me too.Thanks for that, looks like we are still actually sick, even though we are in treatment. Sometimes I try to imagine how I would be feeling if I had chosen not to take pred. I suppose it takes a bit of getting used to, having a long-term illness. I've never had anything lengthy before! Ditto to you, Chico. It has taken me a while to get that it isn't just the pain,
but there really is an illness here. It may be that the docs judge by the pain
an it seems no one talks about the other symptoms. BTW., Some symptom
lists I have read list depression... I know may f us here have experienced that
and have attributed it to the frustration of pain, exhaustion, pred side-
effects, etc. That seems to be a "chicken/egg question to me. How can we
determine that? (rhetorical).

Time to pull myself up and prepare for thmorrows guest.
pgrI too am a slug crawling across the landscape!

A slug crawlintg across the landscape? That just made me really laugh out loud.

Thamks, you made my morning. I'm surely going to borrow that phrase.

Hi Chico, I'm right there with you, crawling across the landscape. The
acceptance of where you are right now may be a key. The landscape sure
looks different from here. Maybe I'll see things I haven't seen before!

Some one I once worked with was leaving his job, when I asked him where
he was going, he said that he had to open up his life to make room for
something else.   I have never forgotten that. I'm trying to see PMR from
that point of view. (Is it possible?)

LibethChico,

I can relate to getting used to being an "invalid", as you put it. However, every time my husband would try to keep me from doing something so I wouldn't hurt more, I would have to tell him, "I am not invalid (as "not valid"). The slug image is quite a mind picture. Here in Oregon we have a LOT of slugs (look up banana slug sometime hi everyone,

sorry for the long absence, lots of family stuff going on, astronaut son came for a visit.

my tests revealed nothing has changed from last mri, i have some arthritis osteosporosis, bulging dics and some lesions on my spine.

blood work, sed rate came down from 60 to35, b 12 a little low, he gave me some vitamins to take, so all in all it was not so bad news, its just the pmr and i am one of those who needs a bigger dose of pred to feel better, which brings me to the conversations before me.

how are we supposed to feel, i expected the pred to make me feel a lot better than i do, even on 20 mg. i am still dragging my body around and every little chore is a big exausting job, even taking a shower takes my strength away. there are a lot of things that i can not do any longer. should we accept that this is the way it is going to be until this goes away?

i know my problem is accepting the way i feel, it seems like i got old too fast, and my mind is still going a mile a minute about stuff i want to do, and then when i start to do something,i realize i can't do this, and i get angry

but listen, it could be worse, i am thankful for the days i feel ok and the days i do not feel well, i take it easy and lie down.

i feel bad for you out there that have to go to jobs or have children to take care of. hopefully things will get better.

                   love to all     georgiana

Wish I could take credit for the marvelous crawling slug analogy, but can't, that was Libeth's in an earlier post on this thread. Made me laugh too, can SO relate!

Thanks for sharing with me, instead of telling me off for complaining - I feel very aware of being complaining, and I hate that. It is really helpful to know that how I am feeling is "to be expected" as it were. Just a pity we ALL have to suffer!

Anyhow, keep the funnies coming, please!

You all are sooooo funny.

Now I'm having visions of a "PREDHEAD SLUG"

I feel the same as most of you...between 50-75% of what I used to be depending on if I over do or not. But I used to not worry about over doing it. I could go crazy for a while and bounce back in no time.

One thing I seem to forget sometimes is how much pain I was in before. It was REALLY bad before the Pred. I have to make myself remember that sometimes. It may be a long time before I feel like myself again and then I'll be older so it won't be the same anyway, really.

Kathy

Hi G! Great to hear from you. I was just sure your tests would show something besides PMR. You just have so much pain at 20 mg. when most of us are greatly relieved. Anyhow, I'm so glad you're back, girlfriend.

Shoulda' know Libeth thought up the slug thing. It's really funny.

Hi Georgianna. Very glad to hear from you, I was getting concerned.
You do sound better than your last posting. Good! A certain level of
acceptance seems to be a key. I keep looking for something good in the
shape my life has taken; saving a lot of gas money since I can't bear to
drive! Also, I'm a reader and have read more books than I ever have
before in my life. Sounds a little feeble doesn't it? Oh well. I'll keep
looking.

Kathy, I really related to your comment, "I could go crazy for awhile and
bounce back in no time." I have been thinking after reading the postings
for awhile, that here are people who are doers, who have constantly
pushed the limits over a long time, who have minds that are constantly
making plans, looking for new mountains to climb, new rivers to cross,
new achievements to accomplish......The body is finally saying "Enough,
already!"

Libeth

Hello All,

It's good to read your posts. I'm now a slug crawling to the office each day. I went back to work this week and find by mid-day my shoulders and neck are so sore I'm having bad headaches.

I learned that I'm not too good with writing things by hand anymore. After filling out tons of new hire paperwork I had some really painful fingers.

Just wanted to say hello! If you don't hear from me much it's because I'm pooped

Take care of yourselves....Kathy

Kathy, I am glad you found employment. That sounded like a real concern
for you in earlier posts. It really is 2 sided, isn't it... the relief of work and
an income combined with the pain and exhaustion of this condition. I
only worked very part time during the summer & now am back to full-
time. I find I can make it through a day or 2 then I start to get really achy
& tired.

What is the job? Are you at least enjoyig it? Take care of yourself!

I went to the eye docor yesterday - previous history of glaucoma and
glaucoma surgery. The pred has NOT impacted my pressure. However,
the surgey in the left eye has scarred over, causing he pressure in the left
eye to escalate so they are going to repeat it in November. It is not PMR
related, but just feels like 1 more thing right now.

Rheumy appt on Monday & plan is to finally cut to 17.5 mg. I have been
on 20 mg for 6 weeks. Will let you all know how tht feels
Hope everyone else is doing well!

pgrHI Libeth,

I am feeling a little better, ow i am tapering the pred. so i am getting some aches and fatigue from that but i will persever, i want to get off that stuff so bad.

i also do a lot of reading, i like mystery and true crime, sometime have a hard time concentrating, i guess that is old age.

Georgiana
so georgiana how has your son adjusted to normal life after his space journey,,,,,that amazed me that he was able to do that...not many of us ever have that opportunity.....you must be so proud.

He did this with a comrade from Canada right??

rose

Hi PGR/All,

I finally got the job I wanted. I accepted an offer with the State of Oregon, Department of Education today...whoopeee! I have been working in a bank call center on a late swing shift for the last two weeks, dreading every moment of it. I've been working swing and interviewing days and I'm so exhausted I think I'll spend the rest of the week in bed. I start on Monday and I couldn't be happier.

Now...If the PMR and Pred will let me concentrate and do a good job everything will work out. I forgot to take my pred this morning due to all the excitement and finally remembered about 4 pm when I started feeling kind of odd and sickly. Bad headache tonite and I think I'll need some extra pain meds to make it through.

I noticed my left shoulder is hurting more now when I try to lift it, normally it was just my right one that bothered me.

Does anyone have pain in thier back at the waist on the right side? I've had it 24/7 since I started pred and forgot to mention it to the doctor on my last visit. It's just sore, kinda like someone kicked me in the back.

Eyes are wanting to close...need sleep....have a wonderful week everyone!!!! I love reading all your posts, you keep me sane and with PMR that's a big job.

Kathy

congratulations Kathy, that's brilliant.

Margaretyes, congrats on the new job, but please don't forget your pred!!! And YES YES YES I get that right sided pain, at waist level, at the back and around to the side as well. I dunno what the heck it is, had my doc check it, he doesn't know, but it's not my liver, so that's OK. It is some sort of muscle thing. Occasionally I feel it up under my ribs as well, so I don't know if it's connective tissue stuff, muscle or whatever. I get it more to the front than round the back.. I fell twice in 4 days about a
month ago, and it got worse and was very bad for about a week (couldn't
turn over in bed) but has now returned to a bit of a nag rather than anything
serious. I thought at first it was my liver as well - this pmr ha turned me
into a hypochondriac

MargaretHi Kathy,

Congratulations on the new job! Good for you! Should help lift your
spirits to deal with "ol PMR.

Yesterday I saw my rheumy and went home feeling I had been "dismissed"
as a patient. Since my tests are showing pretty normal he told me to drop
my pred immediately from 12 to 10 mg, and said I should see my PCP
about help with the fatigue. He even said he doesn't think I have PMR
although he diagnosed it in March after a dramatic response to the 20mg
of pred. He told me to make another appointment in 6 weeks. What for?
I did make the appointment but I am going to cancel it. Don't know what
to do now.

Libeth CONGRATS Kathy! I am so happy to hear about your job! I don;t get the
pain you describe, but i get other strange pains... for example, I have had
an incredible pain in my right foot for the past week. It is very localized
and sore to the touch as well as walking. The dr thinks I did some kind of
soft tissue injury when i walked last week. I think I am getting some weird
phantom pains somehow related to the PMR... who knows.

In the meantime, I am aching in my neck and shoulders for 3 days now. I
have been working about 6 hours a day then collapsing. Trying to make
the work hours somewhat in the middle of the day when I feel
best.Margaret, If you are a hypochondriac, we all are.

Need to get going now...
feel well
pgr

Libeth,

Maybe you should see a different rheumatologist. And you can probably expect to see some symptoms get worse with a 2mg drop in dosage...that's almost 17% drop. It seems to be a consensus here in the forum that dosages around 10mg should drop only 1/2 to 1 mg at a time. Also, from my brief time on the forum, it seems that the ladies are almost all affected with fatigue, and that symptom is mentioned in almost all the articles on PMR I've seen.

If your current rheumy plans blood tests in 6 weeks, it would be worth seeing him/her. But without testing, he/she will probably just ask how you're feeling, tell you to drop some more pred, and send you a bill. If he/she doesn't think you have PMR, then what is he/she doing to find out what is going on? I renew my suggestion to get a new doctor, or else hold this one's toes to the fire.

Thanks everyone, I really am happy!!!!

Libeth, I agree 100% with Bob, you should see a different rheumatologist!!!!! A second opinion is always a good option. I would even ask whether the doctor has a good deal of experience working with PMR patients.

I went to a Doctor of Internal Medicine who works with lots of people with PMR, RA, OA, etc., after being ignored for two years by my GP. My internist has been so good for me that I only use her for treatment. I've had way too many doctors who make up their mind about something and stick to it. I've ended out having surgery in the end because the doctors did not provide a good diagnosis.

I never knew what a Doctor of Internal Medicine specialized in until I was recommended one and I looked it up.

*************************Doctors of internal medicine focus on adult medicine and have had special study and training focusing on the prevention and treatment of adult diseases. At least three of their seven or more years of medical school and postgraduate training are dedicated to learning how to prevent, diagnose, and treat diseases that affect adults. Internists are sometimes referred to as the "doctor's doctor," because they are often called upon to act as consultants to other physicians to help solve puzzling diagnostic problems.*********************

Anyway, if you're an adult, It would be best to use an Internal Medicine Doctor as your regular physician, so if you know anyone who has a good one that might be a good option for you also.

Just don't give up because Doctors are NOT always right!!!!!! I once had a bad sinus infection for about 2 years. The whole time I was telling my doctor that I had a sinus infection, she said no I don't. She sent me to a specialist for asthma, put me through awful, disgusting tests and told me I had asthma and started treating me for it. I didn't have asthma. I finally talked to a freind who knew a good eye, nose and throat doc, and I made an appointment with him and ended out in surgery. It was too late to clear it up with treatment at that point. It was so bad one sinus completely closed and I had permanent damage to my vocal cords. Now I trust my own instincts but PMR through me for a loop. I thought maybe it was just my back for a while or getting older or I was straining muscles too much...lots of excuses.

Soooooo.....PLEASE SEE ANOTHER DOCTOR!!!!!!

Kathy

Kathy, congratulations on the new job!!!

Libeth, your rheumy's attitude at your last visit is so discouraging. If he doesn't think you have PMR, what has he been treating you for? And anyway, test results would tend to be more normal when you've been on pred. for a while. If he doesn't think you have PMR now, does he plan on checking for anything else, or is he just "dropping" you? I hate it when docs do taht. I'm sure they get frustrated when they don't know what is wrong with a patient, but it would be nice if they would stick with it. One of the leading fibromyalgia specialists in the country (who lives here, is now retired, but still does research) said in an article that people with fibro. are considered to be "bothersome" patients, because they have such an array of symptoms and complaints, tests are normal, etc., etc., but docs need to accept the challenge and work with these people. I feel it's the same way with PMR. So, if your present rheumy isn't willing to go the distance with you, perhaps it is time to find another - a daunting task, I know. Good luck, and I'll keep you in my prayers for things to work out well.

Reni
Libeth, the ONLY tests that mean ANYTHING are the ones that EXCLUDE other diseases. There is NO test for polymyalgia rheumatica. It is a diagnosis of exclusion and clinical symptoms. If you have the clinical symptoms of PMR and other diseases have been ruled out, and you respond to low dose pred, you have PMR!

ESR (sed rate) and CRP are not tests for PMR, they are simply inflammatory markers which may or may not be present in a huge variety of situations, including the common cold, let alone PMR! As we all know, I have had NORMAL sed rate and CRP all along. Up to 20% of people with PMR and even GCA can have a normal sed rate and a lot of literature says sed rate should never exclude a diagnosis of PMR or GCA.

I don't want you to have PMR Libeth, but you have got something, and unless your rheumy has diagnosed you with something else, then he should listen to your symptoms, not your lab results. See another rheumy. Let us know every step of the way!! Libeth,
I am sorry that somehow I missed what you said when I wrote my last
response...
I absolutely agree with the others that you need a new rheumy! My
rheumy didn't want to believe I had PMR, but she did an immune panel
and tested for everything else she could think of... RA Lupus every
autoimmune she could think of... then she said ok she felt comfortable
that it wasn't other things and since pred is working it probably is PMR.

She has seen me every 2-3 weeks until now. She is keeping me on 20 mg
pred or 3 months since I have some breakthrough pain from time to time.
When we begin decreasing in a few weeks, I will be going to 17.5 every
other day with 20. Then to 17.5 every day then to 15 every other etc. The
% drop you are talking about is too big!

I tell you all this so you see the difference in a physician who works with/
for you!

Please look for other options and see if there is anyone here in your area
who might know a good rheumy!

In the meantime, as chico said... keep us informed! We are thinking about
you!
pgrDear good friends,

thank you all so much for your kindness and concern, the very thing I am
not getting from my rheumy. I have decided to cancel my appointment and
not go back to him. Two can play the dismissal game. I'll go back to my
PCP and ask for a referral to another rheumy. If I can't get one from her I'll
find another way to find one. If I sound purposeful, I am, but I am also
pretty shaky from all of this.

Hugs to all, LibethLibeth, Shaky is normal. I am more often than not uncertain about how I deal
with this (insert word of your choice). How long will it take you to get into
your PCP? Would it make more sense to put in a phone call? Do you know
anyone in your area who sees a rhuemy for any reason? Know any nurses or
drs who might know a good rheumy? Just wondering if there is a way you
can find someone more quickly and with a good rep. If you need a referral
for insurance, I have found who I wanted then called my pcp and gotten him
to write the referral to who I wanted.

Keep on focus - and feel our support when you get shaky.
pgrLibeth, how unacceptable that people who are suffering like you should
have such a load of garbage dumped on what you're already carrying.
Please don't personalise it. It is their job to help you with something that is
really beyond your contrlol. I know what it feels like to think that I have to
figure it all out. The truth is medicine knows very little about pmr. We work
very hard to do what we can to take care of ourselves often with very little
guidance. It's so true that we have to be our own advocates, but why spend
our precious energy on unresponsive providers?

Your in my thoughts,
Geralyn

Libeth,

You shouldn't have any trouble getting another referral. Most insurances allow for a second opinion from a specialist.

Take care, Kathy