I'm new!! | Arthritis Information

I was happy to find this forum. I hurt very badly every morning. I have been diagnosed with PMR by a rhuemy last Sept. I was always very active. I am a wildlife photographer
My question is What does everyone do for formal exercise. I used to lift weights and was in very good shape. I have tried that now but am in a lot more pain.
Good to meet you all
Kathy
I use those elastic bands. There is a part you can buy to add to them that fits in the door - you close the door on it and it holds the bands and you can pull them from the door. I also do gentle yoga. I go to a lady that works with ill people like me. Do you take pred or any other meds for the pmr?I take 5mg of Pred. I Started drinking mangosteen juice and pomagranat juice. I just hate to take other meds because of the side effects. Since I was diagnosed I've gained 15 lbs. This is very depressing. Thanks for your reply. I am drinking mangosteen juice also. I stopped taking pred at 5 mg after a couple of months and also take a NSAID when i have to. What mg of pred did you start with? What brand mangosteen do you take? After i started drinking it I lost the body pain i had. Dont knkow if that did it but i aint gonna stop drinking it now! It is supposed to have anti-inflamatory properties. I have terrible stiffness in my knees, hips, shoulders, neck, and back and right shoulder is mostly frozen - at least i cant use my muscles to lift it. I dont have the excruciating pain anymore. I can go a week without the 50 mg nsaid - even low grade pain gets old.

I also want to report back that i love the magnessium Calm drink. Go to www.petergellham.com and check it out. It helped immediatley with some muscle pains in my back and twiches i was starting to get in my face. Also, with all the calcium i take - this has helped with constipation and hard stools immediately. I am thinking about trying the vitamin drink.

I am so thrilled to have someone to talk to about PMR. I drink Thai mangosteen juice from Agro Labs. I think I am a bit better. It looks like dirty water but tastes good! How much do you drink each day??
I started out with 20mgs of Pred and gradually decreased. I hurt from my neck to my knees!
My tests were very high at first but are better now (blood tests).
I find some people don't understand PMR. I was to give a wildlife talk for a group and had to cancel. They were not happy.
I hope I feel better this Summer.
Thank you for the link to petergellham...I will check it out
Kathy
I just ordered the Natural Calm!!!!
The link didn't work but I found it..

I have tried pure mangosteen juice (genisis) and also blends. I just swig it all day long. I probably go thru 2 bottles a week. I found some mangosteen supplements at vitaminshoppe.com. Dont know if they work but i also take four a day. Let me know how the Calm works for you. I dont feel like i need to use hot packs on my upper back anymore. Still stiff and sore - but much more manageable. And the other improvements I got are worth it. I always look for natural remedies before meds. I also think the liquid is more absorable by our bodies.

Its http://www.petergillham.com/

sorry all....hope that works.

Here is one more thing to look at.... http://www.pycnogenol.com/flash/

I read that a german study was done and showed decrease in inflammation taking 200 mg a day. Also, do you take high grade fish oil? I started at 8 g a day of liguid (keep it in the freezer, tastes better) now I take 4 g. You can read some good info at Dr. Barry Sears website http://www.drsears.com/Home/tabid/330/Default.aspx Since we have a disease of inflammation - i take a lot of stuff to combat that...also ginger and tumeric (curcumin). I need to figure out how to get rid of the stiffness...I am afraid to walk much cause I tend to trip on stuff. But I am so much better than when I started with this 5 or 6 months ago. I used to have to use a walker in the house and I would be in such excruciating pain. I dont get that anymore - just low grade and that horrible stiffness. I am retired so I dont have any obligations but I sure want to get back to walking and snorkleing and traveling...... I just found maybe a pretty good accupunturist in my smallish town....I am going to give it a shot.

I'll check those sites out. I feel terrible today!!!!! But can still smile. Hi Kathy......my name is Susan and I too have always been active. Playing golf several times a week, working out (lifting weights) and walking my dogs. When this PMR first started I belonged to a Boot Camp for Women and would join them three times a week for a real workout.

I live in the canyon and when I leave my front door it is either up the hill or down....both directions can be a challange. I discovered early in this disease that we must KEEP MOVING. I walk my dogs daily and I two had problems tripping, but discovered that all I needed to do was lift my feet and not drag them. I am now back in the gym working out with weights....not as heavy as before, but I am seeing progress. One routine I have problems with is the "flat flys". Oh well, it will come.

I say go for it....just keep the weights low, do lots of streaches, walk whenever possible and KEEP MOVING. Good luck....it is not easy. Susan

Thank you Susan! I have started with some lower weights. My legs are the biggest problem.
I used to squat a lot of weight but now just go to my knees. I am going to join the Fitness center next week. Thanks for the encouragement

Thanks to every one who posts on this forum,you've given me many words of encouragement.

I was dxd in July of 07 & also started on 20 mgs pred but have had a few setbacks, the last being a week & 1/2 ago when I lost the use of my right arm for 3 or 4 days. I had to increase from 7.5 mgs to 12.5 mgs for a few days but I'm back alternating between 7.5 mgs & 10 mgs. I will take it slower this time as it is not worth the pain. As to the meds for acid reflux....I am taking a prescription called Ranitidine twice a day and was on it before PMR. I rarely have attacks now unless I over indulge with the chocolate or cheese.

Lots of good luck.

Thanks for your response the reason i was asking about being on meds for acid reflux was because my doctor tells me they don't know what causes pmr yet recently I noticed a mention of polymyalgia in a pamplet of my reflux meds as an adverse affect and I was curious as to how many people might be on reflux meds and if there might be a link there.Hope your feeling better.Hi Kathy,

I'm new too, but I am not new to PMR. I am sorry to hear about your diagnosis, but there is good news. I have had PMR for 4 years, but I am able to walk 3 miles a day and lift light weights. However, I cannot do these things without my prednisone. It will get better, and you are not alone! Oh, you have a really cool job

wildflower

Kathy and all, I agree with you that people do not understand PMR. My boss thinks I have "a bad back" and others think I have fribromyalgia. I have tried to explain as clearly as I can, but usuall to no avail. Does anyone else have this problem of getting people in their lives to understand? I get it that it does seem odd that I at one moment get around well, and then an hour later can hardly walk up the stairs. Does this sound familiar?Kathy...that is all too familiar. I can have a great day, and the next is usually pure hell. It comes and goes like the wind. I may be that I do too much on my good day and cause the next day to be awful. oh well...it could be a lot worse. hi I have just been told by GP that she thinks I have PR, my pain is neck clevical and tops of my arms (right one mainly) and hands and wrists.

some days cant lift my arm to brush hair, going to bed is a night mare as cant get comfy as in too much pain.. then wake up in pain, have loads of different pillows to get comfy electric blanket...

Was put on predisolone for 2 weeks then weaned off them ,had 2 weeks of bliss no pain, but as soon as I stopped taking them the pain was back instant

My GP want s to put me on it again for 2 years but have asked to see a rheumatologist first as cant imagine how much weight I would gain ???

Does anyone else just have the same pain as me ?

ie : jaw. neck.clevical(which has swelling).upper arms.wrists.hands..sometimes hands are numb on a morning and now after typing so long tingling, wrists ache and the top of my right arm feels like it is been wrung out, cant even lift it somedays or reach for things...

woukld be great to hear from others !!!

GP first thought it was fibromyalgia but as it was only my arms etc decided on polymyalgia also had blood tests to semi confirm ...

many thanks for reading

kazzy 1960

Hi Kazzy,

Good to hear from you - it must be good to have a diagnosis for your aches and pains, though it doesn't make for a very good Christmas present! The fact that prednisolone stops the pain so definitely is one of the diagnostic tools docs use to confirm the diagnosis.

I admit I wasn't thrilled to be put on cortisone but the pain relief is amazing and the few extra pounds is just the price I have to pay. If the problem is ONLY pmr, then the choice is hurting or getting fat - not ideal, but you can judge for yourself and some people on this forum have lost the weight after reducing or stopping pred.

However, there is a related problem called GCA - giant cell arteriitis - which often presents itself with PMR and causes severe headache, sensitive scalp and temples, stiff neck and - much more seriously - can lead to blindness and/or stroke if not treated. The treatment? You guessed it - prednisolone, and in high doses, too. When the symptoms are as severe as this, there is no choice, is there?

By all means get a second opinion but take care, especially if you get headaches. Good luck and happy holidays!
C.

I have been told i have PMR i am only 31 !! any one got some helpful tips for me ??

Jeffreys....The one important thing is to read all you can about this disease and know that it will eventually end. Are you on prednisone? Ask any questions you have and someone here will be sure to try and answer you. Try not to stress too much because that does tend to make things worse.

I do Pilates 3X week but had to give up the treadmill because of leg cramps. 5mg prednisone holding me pretty well. Tried to reduce but got some symptoms back. Now I have developed Raynaud's with lack of circulation to fingers and toes. Related?Sorry to say Elizabeth, but yes. Raynauds is another autoimmune disease and it is said that if you get one then sometimes you will get another. Mine was fibromyalgia.

Take care.

Pat

I too am new to this forum and will continue to read up on the past posts. I started symptoms in Sept '09 and was diagnosed in Oct '09. Started with 800 mg of Motrin, 3x day for some minor relief before diagnosis. Following diagnosis, 40 mg of prednizone and the 2400 mg Motrin. Added Prilozc to counteract the Pred and Motrin. Now down to 17.5 mg of Pred, the Motrin, and Prilozc. Would like to taper off of Pred or Motrin, but I seem to have hit a wall. Each time I reduce either, I have the symptoms return (now only in my shoulders. Then I return to the previous pred levels and wait to stabilize. Any suggestions?? Hi Girls

Over here (UK) a great number of people with PMR find Power Plates and Aqua-aerobics great. No stress. Also a crowd are trying Nordic Walking Sticks and Age Concern and Help the Aged are now running classes in the use of Nordic Walking Sticks. Worth looking into.

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