I don't often post anything of a personal matter as I think that everyone has their own problems to worry about without adding mine into the mix. Because so many of you have so kindly messaged and posted about my illness, I decided to explain it on here.
I have 2 things/ailments/whatever.... The first is a very severe form of Polymyalgia Rheumatica. It is usually quite well controlled with Prednisone...but sometimes, for various reasons, the medication doesn't work and I get a full on attack. That means very painful joints, shoulders, hips...and my muscles become so weak that I can't even walk around, or raise my arms high enough to brush my hair...assuming I could hold the brush...which I usually can't...and I certainly can't type!! Attacks happen quickly, and can last anywhere from a couple of days to a couple of weeks.
Without being too technical, they test certain blood levels and "normal" is anything up to 30. Last week, mine was well above 200. It has to be lowered with high doses of Prednisone. The good news is...I had a call from the Dr. a while ago and it is now down to 138. Only another 108 to go and I'll be "normal" ?? The other good news is...when the attack ends, there is no permanent muscle damage. It is a weird ailment, and it usually goes away of it's own accord after about 3 years. Some people get a more severe form and never lose it. Unfortunately, I belong to the latter group and have now had it for 12 years.
The other one...the 2 often go hand in hand...is Giant Cell Arteritis. (Chronically infected arteries). Luckily, mine was diagnosed early. If left untreated, it can cause a stroke behind the eye and it means instant and irreversible blindness. I am very fortunate that it has not affected my sight at all. I just need twice yearly checks by the Opthalmologist. It too, is controlled by Prednisone.
I can't whinge too much... Most of the time I am completely healthy, happy and can do whatever I want to. I just wish that it's "attack mode" could develop better timing and not keep on getting in the way of my plans!!
Hope that I haven't bored you too much...but it's a difficult thing to explain.
Thanks again for your kind thoughts.
Those of you who are going to Green's Lake...and those who aren't...Party hard and have a ball!!!
You definitely haven't bored me Pam. Its a lot easier to understand when its explained fully like that. I wish you well. I know how keen you have been to get on the road. Will see you at the beginning of winter next year as I come through that way. Looking forward to meeting you and having a good chat. Chin up, stay positive and know we are all thinking of you.
My mum has fibramyalgia (spelling) and she is in agony when she has an attack and like you can't even raise her arms to do anything much. Just have to let it run it's course.
She has had it now for about 9 years.
I would think both "myalgias" are along the same lines.
I hope you recover poste haste and can get on with the business of life.
thanks for sharing Pam, glad to hear that your blood levels are starting to get back to normal and you will be back on the road soon, you have a very positive attitude which is great, take care.
You poor girl !!!!! The friend whose husband is getting the Bone-marrow Transplant soon, has exactly that, including the Giant Cell Arteritis, so I know exactly where you're coming from.
Hers is permanent too, and not going to get better. I am always amazed at how much she can do. She refuses to let it stop her from doing anything, and doesn't stop to rest nearly enough. She says if she stops, she won't get started again.
She's in constant pain, the cause of which she says is the muscles pulling away [or trying to,] from the bone.
Thanks for your concern everyone....it is really appreciated. As I have stated previously, it is great to be a part of such a great forum with so many caring people.
I have been able to type for a couple of days now....inability to type only happens while the PM attack is at it's worst. Could be anywhere from a few hours to a few days. I am feeling much better, and another blood test tomorrow will hopefully show another improvement.
I haven't been on here because I have had no internet since Tuesday...hopefully now all fixed. I have to give credit where it's due...Telstra really worked hard at rectifying a problem in the phone line between my house and the exchange. They even came after business hours.
Beth, I hope that you are feeling better now. In answer to your question re: prednisone dosage...it varies. I have taken it every day for 11 years in a maintenance dose of somewhere between 4mg and 10 mg. This attack was the worst one I have had for almost 2 years, and at present I am on 250mg daily. If tomorrow's blood test shows a dramatic improvement, the dosage will be halved again for 2 weeks, if everything continues to improve, it will very gradually wean back down to my maintenance dose. That will possibly take up to 3 months.
It's probably not ideal, but it allows me (almost all of the time) to do whatever I choose. I'm into DIY, so I renovate, garden, paint...virtually everything that I did before.
I never leave home without prednisone in my bag and I don't anticipate any major problems with hitting the road. I will be self sufficient and if I happen to be ill, I will just stay somewhere and rest up for a few days until it passes.
Must buzz off now and read some of the squillions of posts that I've missed. You lot really have been busy!!!
Cheers all. Pam.
-- Edited by Travel Bug on Thursday 13th of October 2011 10:24:19 PM
Good to hear you're gradually getting better Pam. Me too. I'm seeing my doctor again first thing in the morning for her to listen to my chest again. Then I have an appt at the PA straight from there, about a 'thing' on the side of my nose which may have to be cut out. Not looking forward to that. But has to be done, of course.
I get pooped really quickly, not enough air getting into the lungs. This morning I was gasping for air just walking up the pathway to my car! (It's a fairly steep walk) I'm supposed to be resting, of course.
Luckily for me, Lesley wanted to spend a good part of today with her son, so I just dropped her off, did a little shopping and came home. Then they both came here to have afternoon tea with my daughter and grandson, who were coming straight from school. But Annie & AJ ran into traffic chaos on the Logan Motorway from the storm. She took a video of all the hail banked up alongside the Motorway.
A half hour trip from school to here took her 2 hours! So they all ended up having dinner here instead of afternoon tea!
