Reminding folk how we feel

I understand so well what you mean.

I am loosing my vision day by day.

Take good care of yourself, do all you can to stay well.

iellen

Haha.  I almost always start the conversation now with, "Have I told you this?"  If they say yes they generally then kindly ask me how I'm doing now, which at least saves them having to listen to the whole painful story, only to a brief update. 

Do you know what's causing the vision loss?  There are several things associated with prednisone some of which are treatable, like glaucoma and cataracts.  

That's part of our problem--that most of us don't want to complain. When I'm asked how I am. I reply, "I'm just trying to cope." But then they don't seem to know how to respond, so they just say, "Oh." Maybe we should all scream, "I'm %$#@ hurting, you idiot!!!" And then calmly, "But I don't like to complain."  :-) 

I prefer the second option Ron.  Do tell us how you get on!!!    

( Point well made ).     J

My husband is exactly the same....he lives with it, sees it, but dose`nt "get it"  same with car door!  When asked how I am today by friends, I say, "well at least I`m on my feet....but how far they can go is another matter!"

?I do have a friend that says, if I was you, I wouldn`t cope!....to which I can only reply.....what choice do I have!...she dosen`t mean to be hurtful, or bring it home to me how I feel....she is very energetic, and I say to her....anyone can wake up with this......she has had cancer, and thinks I have a worse time than she did!!.......

That's true, but the people we live with (or work with) need to know we have an invisible disability.

Hi Sharon,I am sorry you are going through this.I and my husband

are both chronically ill.I was hit first years ago with fibromyalgia and

am now dealing with pmr symptoms.My husband was hit with

rheumatoid arthritis severely 2 years ago.He woke up and couldn't

close his hands and was in severe pain.I was able to talk him through

the low moments of being scared and through the tears.Just be there

for him as best you can.He will be comforted with just your  being

there for him.Try to find ways to laugh even though it is the last thing

you want to do.It really helps take your mind off things for a moment.

Keeping you in my thoughts and prayers.

If you have major pain in the thigh and buttock area on 35mg of pred that is NOT due to the PMR part of your illness and you should look for other answers.

The most likely options would be piriformis syndrome or myofascial pain syndrome - both of which can lead to muscles going into spasm and trapping/pinching/irritating the sciatic nerve. Both the nerve irritation and the spasmed muscles can be excruciatingly painful and even lead to sacroiliac problems. If you are given treatments targetting these problems you may find you get on much better - I certainly did. I couldn't walk for more than a few minutes and lifting anything caused so much pain I couldn't have worked - I ended up in hospital in fact.

I told my physiotherapist about the burning sensation I often get in my thighs now when walking, as well as hip joint pain also when walking.  So after the light treatment she did some dry needling specifially targeting the area where the guilty nerves are so it will be interesting to see if I'm better this week. 

Have you had a hip xray for OS?

What's OS?  When I was x-rayed prior to PMR diagnosis (no all that radiation did not lead to a diagnosis, I waited months longer for that) the one area of my body which did not have osteoarthritis, OA, was my hips.  This was a great relief to me as I'd been thinking I should get myself onto the ridiculously long waiting list for hip replacement!

Yes OS is osteoarthritis. I am glad it is not in your hips. I was told that steroids were affecting my hips. 

My former doctor, one I only went to for a year but it happened to be exactly when I became an interesting patient, breaking my leg literally a week after my former doctor, a superb diagnostician, retired, and subsequently developing PMR.  Young interim doctor just kept prescribing Celebrex, which I refused to take, and finally sent me off for x-rays everywhere, including hands and feet where all you have to do is look and you can see the effects of OA!  When I returned for results she said all my bloodwork was fine, but I was "full of arthritis" and this is when I thought my hip was on its way out.  A few weeks after that I thought, that report from her wasn't good enough, so I went back and she actually had the gall to tell me she hadn't told me more because she thought I wouldn't understand.  She had a copy of the x-ray report printed out and I looked at it and said, I see my hips are fine, that's good isn't it?  She acknowledged it was.  So I asked again about the blood tests because I've had chronically borderline iron for many years and she said, all my tests were fine, she would have told me if they weren't.  Then, thankfully, she left the practice and went elsewhere.  A few months later when with difficulty I got to see another doctor she looked at exactly the same tests, asked me if I minded having some of them done again because my iron was low and my inflammation markers, although not seriously high were slightly elevated and she was paying attention to my symptoms as well.  So off I went for retest.  A week later she suggested that I had PMR and gave me the week's trial of prednisone.  Which was the legendary miracle!

I sincerely hope pred isn't affecting my hips.  I've been doing so much to keep my bones strong I think they absolutely have to be fine!  The problem I think originates in the spine, where I do have some OA.

 

I have a very good Dexascan reading for my hips, .2 per cent chance of fracture in the next ten years, but it seems the cartilage is being eaten away. 

What's the blood circulation like in your legs?  Can a physiotherapist or some other practitioner help you improve it, so the tissues, including bone and cartilage, are nourished?  I believe pred can affect the blood circulation to the hips and that's not good.

My hubby and I also own our own business and when I hurt my back it was obviousI couldn't work out in the field any more so I moved to the office. But with taking the pain pills they made me dopy and I was making too many mistakes. So I had to quit and file for disability. Fortunately my sister works for me in the office and i can trust her completely.

Yes pred does affect blood circulation to the hips. I get leg massages and have a physio too. I think the family are prone to osteo arthritis which probably does not help. I think it is one way unfortunately. 

Thanks for this Eileen, I also was wondering why the pain was so high with the amount of pred each day,  wll look into this.  I had stem cell treatment in my left knee 18months ago, and it did seem to work for around 12 months, but my knee started playing up again so I opted to have a synvisc injection as temporary relief as I do not think I can have such a large op at the moment.  I have had synvisc before with no ill effects and my orthopaedic surgeon could not see any reason why I could not have one, but this pain in my left buttock has come on after this, so will check it all out. 

There is no blood supply to cartilage - it gets its nutrients via diffusion from the synovial fluid:

"Cartilage does not contain blood vessels (it is avascular) or nerves (it is aneural). Nutrition is supplied to the chondrocytes by diffusion. The compression of the articular cartilage or flexion of the elastic cartilage generates fluid flow, which assists diffusion of nutrients to the chondrocytes. Compared to other connective tissues, cartilage has a very slow turnover of its extracellular matrix and does not repair."

That's why exercise in OA is helpful - it stimulates the fluid flow.

Wow, that's interesting.  Would exercise help people avoid the avascular necrosis which is a rare side effect of pred?

No - that happens in bone which does normally have a blood supply and it is the loss of that blood supply that causes the necrosis (that's what the name means). It can happen in anyone - but pred increases the risk.

Even a dislocated joint can cause it - that's why a dislocation must be reduced as quickly as possible, it isn't jsut the pain associated with it.

It seems that PMR could be as much a cause of this loss of blood supply as pred is?  Yikes.  I want to trade in my body for a new model, this is getting scary....

Don't think about it so much! It can happen without PMR or any other disease - so why try to identify things it might be? You might as well die at birth if you worry about what might happen during your life. Luckily most people have no idea what may come along to chuck them a curved ball. 

On that cheery note I'm off for my walk, in the suddenly autumnal weather which arrived a couple of days ago. 🚶🍂🍁

Quite summery here on Lake Garda...  

I truly think that MOST of us--probably ALL--wish we COULD exercise! The qyuestion is how? I've explained to my family and friends: Although I'm generally active and don't act my age, "Maybe I don't SHOW signs of grief or complain, but it's like waking up every day with a low grade of flu without the red and runny nose." (I DO sometimes, at 80 yrs. old, wear my T-shirt of Charlie Brown and the large "GOOD GRIEF" sign.) I'm still chuckling at your medical explanation you shared with us about the "diffusion from the synovial fluid"..."compression of articular cartilege or flexion"...and the "turnover of extracellular matrix." THAT'S what I want on a T-shirt!  It's just that, although I'd LIKE to exercise, if I walk by my sofa I hear the call of the mythological Sirens beckoning to lie down. As I said to my doctor, "After I struggle to get up out of my easy chair, all I want is to then sit down to rest!"  My daughter's admonition to "Force yourself" reveals no understanding whatsoever of what we're experiencing, especially when I tripped on the stairs carrying laundry and broke my ankle! (Warning: Don't be stupid and walk for a week without an X-ray thinking you have a sprain!)

I'm a retired art teacher and I'm working on a pictorial logo for PMR that we can wear as a warning to others. But, Eileen and others,  keep on reminding us all to look for some respite that will allow exercise. And, mostly, everybody, keep on helping us cope by realizing we're not alone! 

Today I feel completely wiped, but I think I've had some busy days and it's just all caught up with me.  Planning to vegetate the rest of the day.  Art class tomorrow afternoon, that should be stimulating and fun.

As we've just emerged from an unprecedented drought we aren't complaining - although I broke down and turned on the heat yesterday.  17C was too chilly, extra layers didn't quite do it.

Oops - I was replying to Anhaga and sort of assumed that she'd understand that! For anyone that is interested, here's an ex[lanation in English:

""Cartilage does not contain blood vessels (it is avascular) or nerves (it is aneural). Nutrition is supplied to the chondrocytes by diffusion. The compression of the articular cartilage or flexion of the elastic cartilage generates fluid flow, which assists diffusion of nutrients to the chondrocytes. Compared to other connective tissues, cartilage has a very slow turnover of its extracellular matrix and does not repair."

The chondrocytes are the special form of cells that make up cartilage. Diffusion in this sense is when a substance spreads evenly over an area from an area of high concentration to an area of low concentration - lots of oxygen in the blood diffuses through the blood vessel wall into the synovial fluid (which is the fluid in the joints). 

When you walk you put pressure on the cartilage between the bones - just like the discs in your spine. This pressure causes fluid to be released - like squeezing a grape releases juice - and it flows around the joint to provide the cartilage with oxygen and other necessary nutrients.

"The extracellular matrix is a collection of extracellular molecules secreted by cells that provides structural and biochemical support to the surrounding cells". i.e. a load of molecules that are outside the cells but which were made and released by the cells and which hold other cells up and supply their chemical needs.

So walking squeezes the cartilage - which produces a special fluid which does the job of transporting oxygen and nutrients to cartilage. More walking equals more fluid...