Where is everyone | Arthritis Information

 

its been two days and no posts. i miss you all. 

Betsy, did you have fun in ny?

I need you all.

Georgiana
Hi, Georgiana!

I've wondered what happened to everyone,t oo. It's been so "quiet" on this message board over the weekend. Hope everyone is doing okay. How are you?

I was wondering if anyone else experiences worse aches when the weather changes? I always seem to hurt more when it's getting ready to rain, or low pressure sytems coming in. Weird. I know they say weather can affect arthritis, but it's hard for me to come to grips with that. My back has really been aching and it's hard for me to get to sleep. I'm usually ready to fall asleep in the middle of the day, and any rides in the van pretty much put me to sleep. Good thing my husband does most of the driving. Hi Georgina and all, have been busy with family ect. last few weeks. Fish & Visitors both stink after 3 days! Just joking but I'm really glad they have gone back to their homes! Been on 7.5mg Pred for 2 weeks now and not having any flares..just a bit more tired... maybe thats just visitors hard to tell now a days... so here's hoping! Betsy would love to hear about your trip to NY too. I have been to see "Grumpy Old Women" Boy I sure can relate to 99.9% of that show. Has anyone been or going? Really is a good laugh at ourselves. Reni hope you have a nice visit with the inlaws. I enjoy reading your posts, so informative and full of hope. Lol LynHi Georgianna,  I had a great time in NY.  Also had cataract surgery on my first eye with no problems.  On the day of the eye surgery I develped unbearable pain and swelling in one wrist.   I will go to my PCP today.  Can't stand the pain even with darvocet.  Thanks, later.
Hello all, have not been on forum for awhile, went to visit family in Ontario, such warmer weather there, but had to climb two flights of stairs in house to get up and to go to bed, actually crawled.  Still off pred since last Jan. but the pain is excruciating to say the least, mostly in neck, after acupuncture 6 times, massage, physio, demerol, tylanal arthritis, to no avail....I have been suffering with this since last Sept.x-rayed with cervical spondylitis  anyway I am desperate to find out if anything can be done/or what to take.....was fine on the pred. so what does that tell you, I honestly don't think I can fight this any longer.  I walk with a stagger, unsteady on my feet, had two eye surgeries for cataracts, ache all over my body.  I am 75 and lately I have been sincerely praying for a happy death, I am truly desperate and pray for my husband who so kindly puts up with me.  Please pray for me as I certainly have hit b-o-t-t-o-m with nowhere else to turn

rose
Reni, lynn, Betsy

Thanks for writing back.  Sorry about your wrist, Betsy, what the heck is that, did you sprain it or something? 

Reni have a good trip and enjoy yourself

I am off to the rheumy today for my second shot of methotrexate.  I have been feeling better, who would't on 30 pred. will keep you posted.

Georgiana
Rose, you sound desparate. The amout of pain you are describing is more
than anyone should have to bear, but you must be at the end of your teather
if you are praying for a happy death. You say that you were fine on pred - I
might have missed an earlier post, but is there a reason you've been taken
off it?

Thinking of you

Margaret
tks for reply margaret,,was on pred. for 18 months diagnosed with PMR  but rhumy said blood tests showed low PMR count so suggested all the above treatments instead of using pred.  First started out at 20mg and slowly went down to NIL last Jan. My doctor also says to stay off the pred. as well and therefore going through all the other treatments in vain.  If pred is so bad for you why are you all still on it, baffles me.  Followed advice to get off now back to where I started in the first place...however, pain confuses the mind, my neck is so painful/cracks each day the past 8 months.   Need to find out what I should do next?

rose

Dear Rose....if I were you, at 75 ,I would insist on getting back on the pred! It is quality not quantity of life that counts at this stage of your life!! Tell those those docs  to give you a presciption or you'll take m to court for malpractice. Seriously, they do not live up to their oath  "first do no harm" if they leave you having so much pain!

 

I was beginning to think my computer was not availing itself to this board. Down to 9mg  (3rd time I have been here)- 1/2 mg every three weeks decrease-today is a predisone pain day. I am beginning to tell the difference between the pmr and the drug withdrawl pain. Not that it helps much-it still hurts "real bad". Central California is warming up. Today in the 90's. I do love the heat. I have convinced myself that it is good for the muscles.

Keep the faith- we will overcome

Lonna

Hey everyone:

Been watching the boards also and have to agree it was very quiet.  Things have kind of spiral downward in the last week or so.  I have cut back my preds quite a bit.  I'm down to 20 for the week taking it every 2 days.  Today is the day I take it and can feel the pain coming on.    Had to become proactive and call the doctor and pushed to have my sugar check, which is a good thing, as it was 561.  Lucky I didn't go into a coma.  He took a blood test and told him to have my sed rate done also.  I was so darn disappointed as in 6 months it only went down 15 points.  It is still 50.  I do not understand all the jargon that goes on with this sed rate but I sure have learned a lot about diabetes.  I'm still waiting for the rheumi doc to call.  I'm afraid she will put me back on pred full time.  My hubby takes methotrexate with Enbril.  I don't know which one is causing to lose his hair.  The side effects of that pill is scary. I hope you all have a great Memorial Day.  Have a lot of graves to visit and put flowers on them.  It seems like as time goes by there is fewer people in the family to do this. Oh well,give one something to do.  I have had to stop driving as my eyesight is being affected by the diabetes.  I hope this clears up soon.  Has anyone in your family had any kind of disease like PMR.  Does any one think it is heriditary? 

take care everyone

Anna

Hi, All!

Glad to see you all back on here. Lynn, thanks for the kind words. Betsy, glad you had a good trip, and hope you get that wrist taken care of SOON! Georgiana, it's good to hear that you are feeling better. Maybe the methotrexate is working, and you'll be able to start lowering the prednisone dose.

Rose, your situation sounds awful. Isn't there anything those doctors can do? There is so much focus on pain relief in the medical community these days, how can anyone let you continue the way you are? Do they know if the symptoms are from you cervical spondylitis or the PMR or a combination. Some of your symptoms remind me of my mother, who is 82. She had 2 back surgeries within a month 2 years ago (the second one because she developed a staph infection, and they had to go in and see how far it had invaded). She had that spondylolisthesis, where one vertebra slips over the other one, so it was compressing the nerves. She has not been doing well since then - said the surgeon screwed up, and she would NEVER have surgery again. However, she is in so much pain these days, that she is considering another back surgery. Has commented that she wished she were losing her mind, so she wouldn't know about the backpain, so I can understand your comment. Wish we could help.

Teeger, you mentioned being on pred. every 2 days, and that you are feeling the pain today. When I did the prednisone trial being being formally diagnosed with PMR, my second week on pred. was to be taken every other day. That didn't work, as I had the pain come back. I have read that alternating days doesn't usually work for patients. Just wondered how it is working for you andhow long you have been doing that.

Sorry to hear when you all are having more pain. Can relate, and it's no fun. Hang in there. We're all in this together.

Reni

I certainly can't complain compared to what some of you are going through!  I'm at 10 mg. (was on 15 mg. in March) and except for a little stiffness, am feeling very good, getting lots of physical work done around the farm, riding my big black mare several times a week, etc.  Had the results of my bone density test back (after over 1 year on prednisone) and the doctor said the results were "excellent" and that I had the bone density of a "ten year old", for which I am very grateful!  It must be all the physical work I do.  With the longer days and good weather, I'm even starting to lose a little weight from being more active (although I didn't put on any from the prednisone - have been wanting to lose weight for the past few years!).

Betsy - How's your wrist?  The reason I went back on 15 mg. in March (was at 4 mg. in Dec, up to 10 mg in Feb due to a flare up of shoulder pain) was because I started getting "migrating" inflammation in my wrists and hands.  I'd start feeling sore in a finger or a wrist and within a few hours it would be so painful I couldn't drive (or type - and I do a lot of data entry at my job!), then about 24 hours later it would go away and I'd be fine for a day or so until the inflammation hit another finger or wrist.  Very strange!  My wrist would swell up and turn red, and when the inflammation subsided, it would turn slightly yellow.  Fortunately it hasn't happened again since I've started tapering my dose.

Rose - I'm so sorry to hear you are in such pain.  What side effects from the prednisone outweighed the help it gave you?  The cataracts?  I agree that your doctor should put you back on the prednisone if it takes away the pain and gives you your life back - otherwise you should change doctors!  Please let us know.

Dear, dear, Rose, Please just sit and tell your doc. how bad you are. If you have fallen into a depressive state from the pain, which is highly likely, you need him to understand. If not you need another medico.

We can not diagnose what you need on this, but we are listening. We  just send you  support and the strength to see what and how you need to explain your pain  to the doc. You must not leave anything out. You must tell him exactly what you are doing or taking.

When the pain is that bad it is sooooo hard to see clearly what we need to tell the doc.  Don't cover up those tears;  sometimes for some reason we try to put on a brave face for the doc......give in....let him have it....  Hang in there in the mean time  BIG HUGS     zali
Dear Rose

I am so sorry to hear you are not doing well, I also have the same feelings that you are having, I am 69 ,and some times say this is enough, I want to be in peace.  There seems to be no end for me, I am in so much pain today, I want this to end.  I hurt to the top of my head to the tip of my toe, and that is not a lie.

Good luck, Rose I am praying for you.    Georgiana
Rose and Georgiana,

You two are having such a terrible time! One of my neighbors told me about a group called "helping angels" - nurses who can come to your home to take care of things, or even just keep you company if you need it. If you don't have someone who can help or be an advocate for you when you see the dr., maybe you could check into something like this. I know how awful things were when my pain was at its worst, and thankfully I had (have) and understanding husband and children. But there were days when all I wanted to do was lie on the floor or crawl in hole and have everything go away. Like Zali said, "don't cover up those tears." We do try to put on a brave front for all, including the docs, but that's not always best.
I broke down and cried at the dr. office one visit before I was referred to a rheumy. I told her I hadn't been in for so long because I had almost given up on the medical profession, and just didn't know where else to turn.  Was kind of embarrassing, but it finally let her know how desperate I was for help of any kind.

On a lighter note - on my really bad days, I will take 50 mg of trazodone at night and sometimes even have a glass of liqueuer with it. My daughter always tells me I'm not supposed to. My reply is "the leaflet with the trazodone doesn't say DO NOT take with alcohol; it just says that alcohol may intensify the effects of the med., and sometimes that isn't a bad thing." Don't try this with just any med., though.

Please talk with your docs and let them know you need more help.

Take care.
Reni

thank you all for your kind words of encouragement, I realize now that I can't fight pain this intense any longer, have made appointment with dr. to discuss possibility of going back on pred.  At my age it is the "quality" and not the "quantity" of life that matters...I pray to finish out my life by going back to be a loving wife most of all to the man who is sooo good to me and not have my children worry about my condition.  I did feel so well on the pred. and remember saying if I could feel this good all the time I would stay on it forever.  However with bad advice from rhumy who said I do not have PMR, so how does she know that for sure??? this is the state I have ended up in.    Again I pray to our Lord for you all and your kind words.....Thank you 

           rose


Rose,

Good for you. I trust you will get the help you need and feel good again. Keep us posted. I'm keeping you in my prayers.

Reni
Rose did you finish all your pred? do you have none left? If you have some left I'd just start taking it (say try 15mgs and see how you feel) and this way you an enjoy your long weekend!
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