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From: Lise
Date: 07-01-2005, 06:46 AM (1 of 27)
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Anybody ever had (or even heard of) polymyalgiarheumatica(sp?)? It is the suspected cause of my recent aches and pains but has to be confirmed by a rheumatologist before treatment can be started. Lise 
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User: Lise
Member since: 07-24-2000 Total posts: 231 
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From: Dede
Date: 07-01-2005, 07:36 AM (2 of 27)
| I have no idea what it is about but by the the spelling, looks like some kind of reumathism. Any idea when you'll have it diagnosed? I sure hope treatments will be of help to you. |
User: Dede
Member since: 03-23-2001 Total posts: 469 |
From: joni lowe
Date: 07-01-2005, 12:12 PM (3 of 27)
| Lise, I did a "google" search and found that the correct spellling is POLYMYALGIA RHEUMATICA. There are 609 sites available for viewing. Hope this helps. Joni |
User: joni lowe
Member since: 03-29-2005 Total posts: 75 |
From: Sancin
Date: 07-01-2005, 03:33 PM (4 of 27)
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Hi Lise I have fibromyalgia which is aches and pains plus a few other things. I have been tested for polymyagia rheumatica several times. It is the rheumatica that makes the difference. There is no inflammation with fibromyalgia but is in most rheumatic disorders (there are literally hundreds). The diagnosis comes from blood tests that shows cells that indicate swelling somewhere in the body. I believe the treatment is antiinflammatory medications and depending on where the swelling is some sort of movement suggestions. The rheumatologist will probably check you out for fibromyalgia as well. You will know he is doing this when he presses on odd spots on your body. Your physician may have already done this. The following are very good for both conditions. Should narrow down the 600+ :  http://www.arthritis.org/conditions/diseasecenter/pmr.asp http://www.nlm.nih.gov/medlineplus/arthritis.html http://www.painfoundation.org/page.asp?file=documents/doc_007.htm&menu=1 http://www.fmpartnership.org/ http://www.arthritis.ca/custom%20home/default.asp?s=1 http://www.immunesupport.com/ - while on fibromyalgia, self care is excellent Good Luck *~*~*~* Nancy*~*~*~* " I try to take one day at a time - but sometimes several days attack me at once."
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User: Sancin
Member since: 02-13-2005 Total posts: 895 
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From: Lise
Date: 07-01-2005, 04:08 PM (5 of 27)
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Thank you ladies... I was sure somebody on this list would know something about it. At the moment I have a narcotic prescription medication for pain but it doesn't do anything that Tylenol wasn't doing. I see the rheumatologist on the 18th and then some sort of treatment can be initiated. In the meantime it's no fun ... I can't even onlock my front door in the morning or bend over to feed my cat until the pill kicks in. Poor cat is being fed on the counter top ! The 18th seems like a looooong time away but it's a lot better than the appointment my GP offered-----October ! Sorry if I sound grumpy --- it's because I am ! Lise |
User: Lise
Member since: 07-24-2000 Total posts: 231
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From: bridesmom
Date: 07-02-2005, 12:17 AM (6 of 27)
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Lise I totally sympathize with you!!!!! I was diagnosed with Rheumatoid Arthritis at the age of 42 and I was in so much pain I had to take long term disability from work, I could barely walk and could not use my hands at all, then had to quit cause I couldn't do the job, which meant a whole new career. It took a while to get things under control, but I'm happy to tell you that there is a light at the end of the tunnel. 8 years later I am in better shape physically than I have ever been, I'm still on medication, but compared to what it was like at the beginning - this is a miracle. I am active, go to a gym, lost weight (yahoo), I am back at my first career which I love, I knit, sew, garden, and I even learned how to ride a motorcycle. There were days I wanted to die, truthfully, and I was so angry at times, then so depressed some days and some days I was terrified I was going to end up in a wheelchair and I'd never be able to hold my grandchildren. Have faith, you can live with this and live well. I hope they find something very quickly to relieve you of your pain and get to the bottom of it quickly!!!!! You are in my prayers. Laura
Laura
Tickled pink with my Innovis 4000D |
User: bridesmom
Member since: 01-21-2004 Total posts: 2026 |
From: MotherInLaw
Date: 07-02-2005, 12:58 AM (7 of 27)
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My Mom had RA and fibromyalgia. It was no picnic for her but she was 76. Lisa, let us know how you make out at the doctors. Sorry to hear you are not feeling well. It's a bummer when we get sick. 
I'm regressing back into my youth, I just have to figure out how I'm going to convience my body to come along with me.
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User: MotherInLaw
Member since: 06-25-2005 Total posts: 1118 
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From: Lise
Date: 07-02-2005, 08:18 AM (8 of 27)
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I have replied privately to both of these kind messages. Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: MaryW
Date: 07-04-2005, 04:47 PM (9 of 27)
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I have never heard of this before, but I'm sorry you are having such a hard time Lise. Feel free to post or pm me when you get down.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542 
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From: Lise
Date: 07-04-2005, 05:02 PM (10 of 27)
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Hi Mary, What a nice group of people you have on your site(including yourself). I have had some very caring responses from them and of course from you. Evidently PMR is by no means a rare ailment although I had never heard of it either. Of course it has not yet been established that it's what I have but I should know one way or the other on the 18th. Doesn't sound so far away but when the pain is there every day it seems long. Thanks again Mary and everybody who has answered this - both privately and on site. I truly appreciate it. Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Nanny
Date: 07-09-2005, 09:42 AM (11 of 27)
| Lise, This is the first time I have posted on this site but just had to reply to you. I have had Fibro for years and was diagnosed with Polymyalgia Rheumatica in addition to the Fibro last November. I was so bad that I could barely get out of a chair ( and that was with my husband's pulling me up ). I was already going to a rheumatologist for the Fibro and when He saw me he took one look did some blood work and gave me some cortisone injections. He started me on large cortisone doses and within days I was much better. He told me thar if I was not a lot better within a matter of days we would know it was nor PMR. I have been fighting this since Nov. The treatment is cortisone. My Dr. has been gradually lowering the doses of cortisone every other month as often as he can ( sometimes He has to raise it right back up ) But has already told me I will probable be taking a certain amount of it for the rest of my life. However with what I was going thru, as much as I hate the side effect of this drug it sure beats not taking it. I Hope you find a Doctor as good as the one I have. Good Luck to You. The Arthritis Foundation has a good paper on PMR titled Polymyalgia Rheumatica Revisited That my Doctor gave to me, I think you can get it from their site. |
User: Nanny
Member since: 07-09-2005 Total posts: 11 |
From: Lise
Date: 07-09-2005, 11:42 AM (12 of 27)
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Hi Nanny, Welcome to this site - you will enjoy it. We have fun but we also talk about serious or sad things as well as all aspects of sewing. I thank you for your informative message and will post when I have a positive diagnosis. MY GP thinks it is PMR and I've had the blood work done and should know for sure after I see the rheumatologist on the 18th. I've been told (by the GP) that the standard treatment is prednisone which differs from your treatment-- possibly because you also have Fibro or perhaps just a specialist's preference. Roll on July 18 ! Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Nanny
Date: 07-09-2005, 12:46 PM (13 of 27)
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Hi Lise Prednisone is just another form of cortisone the one I am on is actually methoprednisolone but there are a lot of different forms. At any rate it sounds like you are on the right track. Finding out what i is is half the battle I think. Good luck! |
User: Nanny
Member since: 07-09-2005 Total posts: 11 |
From: Lise
Date: 07-19-2005, 08:52 AM (14 of 27)
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Good morning Ladies, Saw rheumatologist yesterday and diagnosis of PMR confirmed. Had my first prednisone last night and was able to get out of bed on the first try this a.m.!(usually takes 4). According to him I will be completely free of pain within three days. Ain't science wonderful !!! Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Nanny
Date: 07-19-2005, 09:31 AM (15 of 27)
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Hi Lise I've been thinking about you and waiting to see what your Dr. had to say. It is unreal how fast the meds work for this illness. I hate all the side effects of the meds ( I call them FAT pills) but I am sure grateful it can be controlled. I 'm glad that you found a Dr. that can help you. Nanny |
User: Nanny
Member since: 07-09-2005 Total posts: 11 |
From: Lise
Date: 07-19-2005, 10:16 AM (16 of 27)
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I'm not too concerned about the weight gain possibilities at the moment as long as the pain can be controlled. In any case I have lost 12 lbs in the last few weeks because of this so I have a little "breathing room". Many thanks to all who responded both privately and on the site.
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Lise
Date: 07-24-2005, 11:14 AM (17 of 27)
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I just sent this message but it seems to have disappeared into cyberspace.It read ;- Six days later. All I can say is that prednisone is not all that it's cracked up to be ! ! Please forgive if both versions turn up. Lise |
User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Sancin
Date: 07-25-2005, 05:33 AM (18 of 27)
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Hi Lise I have been thinking about you. I am sorry you are having difficulty with the prednisone. When I first started nursing in the 1960's it was considered a miracle drug. I can remember having to take patient's money to the pharmacy each time he or she needed a pill. But as another writer said, it does have side effects. Over the years I have seen the use of prednisone grow to such an extent that it is much cheaper than it was and used for many many things. I have had prednisone prescribed from time to time for my arthritis, but only for a day or two or week at a time. I find, from personal experience as a nurse and as a arthritis and fibro sufferer, that chronic musculo skeletal health problems tend to wax and wane, and to move from one location to another sometimes being worse in one area for awhile and then moving on. At first I thought I was nuts but have learned to accept it as a reality, though friends and family have had more difficulty accepting the reality. I find that I have to accept that somedays I will have a lot of pain and lack of ability to move and other days not and try to go with the flow (or codeine when needed). Going with the flow has been very difficult for me as I am organized and don't like it when my plans don't work out. Practicing meditation has helped me considerably with frustration, pain and fatigue. I hope that you are not experiencing a problem with the prednisone (which does have quite a few side effects) as all of the corticosteroids are really wonder drugs. Sometimes one cortisone changes it's effectiveness and another one is used. I take NSAIDS which are nonsteroidal antiinflamatory drugs and I find that they need to be changed every now and then. I earlier posted some web sites to visit. If you haven't checked them out yet try the immune support site as it has lots of hints on how to deal with pain and fatigue. You are in my thoughts and prayers. Nancy *~*~*~* Nancy*~*~*~* " I try to take one day at a time - but sometimes several days attack me at once."
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User: Sancin
Member since: 02-13-2005 Total posts: 895
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From: Lise
Date: 07-25-2005, 08:00 AM (19 of 27)
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I have replied to Sancin's kind letter privately. Don't want to bore everybodywith my complaints ! Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Sancin
Date: 07-26-2005, 04:22 AM (20 of 27)
If you don't want to read a long message move on now!  I have had some thoughts on Lise's problems but thought I would answer here as others might like the information. I have noticed that a lot of people on this form are 'no longer young' and a number have mentioned health problems. Lise has PMR which is a chronic painful inflammatory condition. There are 2 aspects of such disorders - and there are hundreds of rheumatic disorders -pain and inflammation, usually in joints or muscles affecting movement. Fatigue also is nearly always present in any chronic disease to some degree.  Lise - if you haven't already, you need to run, not walk BACK TO YOUR DOCTOR and get your prednisone dose adjusted.  Corticosteroids are natural substances in the body that do a lot of interesting, but far too complex things to address here. The corticosteriods are like insulin that diabetics use and thyroid hormone that people with thyroid conditions use. So while one takes a synthetic drug, the body still either has some, none or too much of it's own hormone present thus there is no such thing as a standard dose. As diabetics know it takes a while and a number of different insulin dosage or type changes over a period of time (sometimes a long time) to get a dose that works. So does prednisone (or other cortisones) need different and changed dosages, often determined on a trial and error basis by a physician. The other aspect of these conditions is pain. As all of us know (especially women) there are all sorts of pain. The medical community categorize pain as acute or chronic, either of which can be severe or mild. Acute pain ends. Chronic pain is pain that goes on longer than 4 months. Many people have learned, narcotic medications that are taken for acute pain, really don't make the pain go away but makes the pain more distant and easier to cope with and may help one move and not notice the pain. It isn't that simple with chronic pain. There is a LOT of research that goes on in relation to pain. The latest is that chronic pain is interpreted in the brain a totally different way than acute pain. Chronic pain may start out as acute pain which can be treated with analgesics (like the brain's natural endorphans). But if pain goes on and on (even after the cause of pain has ceased) the brain begins to interpret the pain differently at an unconscious level and thus the different treatments are called for. Most physicians have a hard time dealing with chronic pain and tend to treat the source and not the pain itself. eg. treat the inflammation and hope it stops the pain. But we all know that doesn't always happen. The most successful methods of treating chronic pain is using the brain's ability to control unconcious processes. This is where complementary healing (also called integrative) practices become helpful.  Special, strength and / or aerobic exercise has recently been shown to be most effective, even if the person hurts when doing it. Other methods involve mind body activities. We all know they work as we see it when a child is hurt and a kiss on the booboo makes the hurt go away or have heard stories where a mother has lifed a 2 ton truck off an injured child or a trapped hiker amputates his own arm to get released or a soldier carries on when mortally injured. Other methods that work are the use of mood drugs that help people to concentrate on concentrating on the mind. Currently anti depression drugs are being used.  When we say that people, like myself and Lise, have to learn to accept the pain, it really means that we have to learn new methods of controlling and coping with pain - aspirin, oxycontin or the other analgesics simply don't work the same way any more. Most effectively it is what we do with our mind and body ourselves that helps the pain. Medications can help regulate or mute the pain but the coping with it is up to each person and it can be done!! But it does take time, motivation, and some energy. If any of you are having difficulty dealing with chronic pain a visit to a pain clinic is very helpful as there you learn practices to help cope with the pain. For Americans it may be expensive and for Canadians it may not be available close by, but everyone I know that has learned alternate ways of dealing with pain say miracles do happen. Well so much for this book!! Once a nurse educator always one, I guess. Nancy Retired RN *~*~*~* Nancy*~*~*~* " I try to take one day at a time - but sometimes several days attack me at once."
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User: Sancin
Member since: 02-13-2005 Total posts: 895
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From: Lise
Date: 07-26-2005, 04:59 AM (21 of 27)
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Thank you Sancin for all that enlightening information. It gives me hope to learn that prednisone dosage is not carved in stone and that perhaps mine can be adjusted. As for returning to my rheumatologist - I have an appointment for Aug 8th and little hope of having that put forward. He ordered an ultrasound but that can't be done until the middle of October. All is not well with the healthcare system in this province and we just have to muddle along as best we can. Again, many thanks Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Nanny
Date: 07-26-2005, 04:37 PM (22 of 27)
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Lise I have been thinking about you most of the day and the excellent advice Sancin has given on chronic illness. I know how you are feeling because it is not easy. My meds have had to be adjusted quite a few times. Everyone is different but my Rheumatologist has never said that I would be pain free but that I would be a lot better ., Which I am. Of course I am also dealing with some other Chronic illnesses as well which might make a difference in the diagnoses. I am allergic to most pain killers and nsaids so we save them for really needed stuff but one thing that has helped some are muscle relaxants. I have NO med. training at all but I might suggest to you that if you are going to be on Steroids a length of time that you ask your Dr. about taking calcium and Vit. D. as my Dr. said it it a must to help prevent bone loss (that might be because I have degenerative disk disease) Remember Isaid I have NO med. Training just trying to help. All in all I have had to learn to go with the flow. I do things when I can do them and when I can't I don't. Gets you out of a lot of cleaning some days lol . But at least now my worst days are a lot better that my best ones used to be . some days (like today ) I can't do very much at all so i've been reading the threads most most of the day and I must say there seem to be some very nice people here. I've never done this before. I didn't mean for this to get so long but if I can help you with any information feel free to ask! The Ultrasound is something I hadn't heard of before. Good Luck |
User: Nanny
Member since: 07-09-2005 Total posts: 11 |
From: Lise
Date: 07-26-2005, 07:00 PM (23 of 27)
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Thank you Nanny for your support and sympathy. I am already taking vitamin D and Fosamax and as you say sometimes this problem lets me out of doing things that I might otherwise feel guilty about neglecting. It must be even worse for you if you are unable to tolerate the recommended medication for conditions like this. Although it is tough at the moment I am optimistic that once the proper dosage is established things will look much brighter. Thanks again for the support and good luck. Lise . |
User: Lise
Member since: 07-24-2000 Total posts: 231
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From: bridesmom
Date: 07-27-2005, 02:59 PM (24 of 27)
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Lise, Nancy is right on! I am a med lab technologist with Rheumatoid Arthritis who has studied this disease and chronic pain a lot. She has done an excellent job of explaining it (nurse educator of excellence!!) It may take some time but you will find something that will work for you. Each of us is different. The most important thing is being positive, believing that this can be controlled, pain clinics are great. You can do this girl!!!!! Laura
Laura
Tickled pink with my Innovis 4000D |
User: bridesmom
Member since: 01-21-2004 Total posts: 2026 |
From: Lise
Date: 07-27-2005, 04:52 PM (25 of 27)
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Whee! I saw the G.P. this a.m and he is puzzled by my non-reaction to prednisone which sort of worked but only for a few days. Says all my other tests show no abnormalities and that the prednisone should have done the trick. Nothing more to be done till next visit with rheumatologist . On my way out I asked if I could take Tylenol while on prednisone and he said no reason why not. Came home and took two extra strength Tylenol and now three hours later I am absolutely pain free for the first time in over two months ! ! Keeping fingers tightly crossed. Anybody got an explanation ? Many thanks to all who responded either with sympathy or with specialised knowledge. This is a great site with very special people. Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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From: Sancin
Date: 07-27-2005, 07:34 PM (26 of 27)
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Prednisone and tylenol (acetominephen) have 2 different ways they act in the body. Prednisone acts on the hormone level (which in a complicated way is related to the nerve brain action) while tylenol acts more at the source of the pain itself away from the brain. In other words tylenol will not cure what is causing the pain where prednisone may, but will help relieve the pain. Prednisone is an antiinflamatory drug - so is advil or ibuprophen (tho much milder in effect). You see them used together in the newer Tylenol Ultra Relief for migraines and headaches. This medication has tylenol + ibuprophen together and is quite effective. I don't know about the rest of you but I just about go crazy when I buy tylenol as there are so many different kinds. The one I have learned to love is the long acting which helps me sleep through the night without waking up with pain and having to get up and get more extra strength tylenol. FYI. Tylenol Arthritis Pain is exactly the same as the long acting Tylenol and cheaper at my pharmacy. Who ever said that drug companies don't control health care costs!!! Lise, I am so glad you went to your GP. I was going to suggest it today. I am surprised he didn't adjust some of your prednisone dosage until you got back to the rheumatologist. I am also wondering what type of ultrasound you will be having. What site? Do let enlighten us when you have it. Listen to Bridesmom and Nanny. Nanny said she has no medical education but she has life education in chronic disease. I used to tell my students to always listen to patients with chronic disease carefully - to learn from them so they can help others. Bridesmom also has lots of experience but they both say that each of us is individual and need to find our own path. And we are on a journey with a path. Thanks to all who share their wisdoms with us whether sewing or health or quilting and few other things. FYI: exercise: I am big little woman and definitely not very fit. I have been having down days for several days, but forced myself to go to my NIA ([url]http://www.introducing.nia-nia.com/tour/index.html) classes last night. I couldn't get over how much better I felt when I got home! I am like a bull in a china shop at the classes but every one has fun and don't judge. Nancy *~*~*~* Nancy*~*~*~* " I try to take one day at a time - but sometimes several days attack me at once."
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User: Sancin
Member since: 02-13-2005 Total posts: 895
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From: Lise
Date: 07-28-2005, 07:17 AM (27 of 27)
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Having just read M & M's Mom's message I realize that my problem fades into insignificance beside her's and so will discontinue this thread. I'm sure that eventually mine can be fixed but her's will be ongoing. The many fine and caring people on this site will be here to support and encourage her and help her find joy in this new little person. My thanks to those knowledgeable people who have responded to me. Lise
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User: Lise
Member since: 07-24-2000 Total posts: 231
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