Anyone find their voice is weak with PMR? Or sensitive to noise and light?

[Whomaytif]

[Hidden]

Hi Zoemirim. Had PMR GCA for two and half years Fortunatly never had any of the problems you mention.

Keep warm and well, best wishes Mossie

[albatross]

Sensitivity to light and noise are symptoms of fibromyalgia, has anyone gone through that with you, as some people can have pmr and fibro?

I hope you get some help.

[hannmorr]

No not for me. pMR for 15 months and very jumpy sometimes earlier on the high doses of prednisolone but not light sensitive. Hope this improves.

[Hidden]

Hi Whomaytif,

The symptoms you have described sound as if they could be caused by extreme tiredness. Are you getting enough rest?

It would be interesting to know what dose you are on at the moment and how fast you previous drops have been. If you are newly diagnosed then the likelyhood is you are on quite a high dose of pred. Your sleep, therefore, will be brief and restless. If you are reducing too fast you will feel constantly tired out.

If you have felt like this for quite a while I think you should have a serious talk with your GP. You need to know if there may be another condition which may be causing these effects.

Pats.

[Whomaytif in reply to Hidden]

I have been like this for quite a while and found your reply and others very helpful. I was diagnosed two weeks ago and put on 15mg a day. By mistake I took 5 mg and the response was so dramatic - including difficulty in sleeping - that my GP and I agreed to keep it at 5mg. However I had to travel last weekend and almost all the benefit evaporated.

I also have had to manage chronic pain and nerve damage causing foot numbness over a long period so balancing exercise + rest is an ongoing challenge. I do gentle stretching daily and swim 2 or 3 times a week when I can and walk when my feet are happy. They were very happy indeed before I went away! I spend a great deal of time resting!

Yesterday my GP suggested I take 10 mg and she advised that I work at the dose through trial and error over the next two weeks till I see her again. With so many inhibiting conditions I understand what she is saying but this steroid factor is totally new to me and totally alarming because of its astonishing effect on me at low doses and the impact of physical stress on its efficacy..

[Sue8]

I have become sensitive to noise and I think it is probably more the meds than the PMR itself. I also have RA and diabetes and do suffer from chronic fatigue with them so never sure which illness is causing what if you know what I mean. Not heard of anyone have weakening in their voice though.

Take care

sue

[Hoogli]

Yes I do, spindly, wobbly and very quiet. My throat also feels like it is full up, as if I am about to burp, but don't. All a bit strange, my family tend to judge how well I am doing by the pitch of my voice!My dosage is 20ml prednisolone, which I started taking 2 weeks ago, having come down from 60ml due to temporal arteritis., down 10ml at a time.

Judy.

[ritter in reply to Hoogli]

Hi Judy,yes my voice is very weak and my throat feels like it full its a horrible feeling I am also on 20mg per day last year was on 60 mg diagnosed with temporal arteritis in February.I also have lots of back pain in the last 4 months.I am 68yrs I was always very fit this is such a shock to my system.if I can be of any help pls let me know.ritter

[Hidden]

Hi again Whomaytif,

Initially, 5 or even 10mg of pred would not normally be enough to knock the pain and stiffness of PMR back unless you have a very mild form of the illness. When I was diagnosed, I was put on 30mg and I coped, but felt wobbley, I think my blood pressure went through the roof and if I managed 3 hours sleep a night I was lucky. During my very disturbed nights I often had awful dreams. I coped because the pain and stiffness went completely, but there are many people who just can't cope with these side effects and refuse to take the steroids.

The problem with not taking enough steroids to knock the illness back is that everytime you have any stress to your body the illness may flare up and get worse, but saying that, if you are comfortable on 10mg then see how it goes. Your GP knows the score and is keeping a close eye on you. Try not to worry about your weakness regarding your voice. There are a multitude of side effects caused by prednisolone and we are all different in the ways we respond to this drug. My advice would be to leave the worrying to your doctor and make sure you report any changes in your condition to her.

You are quite right to rest, and do pace yourself as much as possible. Best wishes,

Pats.

[Whomaytif in reply to Hidden]

Pats you are a sweetie. Leave the worrying to my GP?! I will join the race to slow the pace. I embrace this space with statuesque face just in case I forget I have a choice in using my voice. What a minor side effect. Silence can make room for meditative and creative pleasures. As for your awful dreams I hope they are now past history, together with high blood pressure which fortunately I don't have although it goes up with age. I dreamt my adult daughter squeezed herself into a tiny urine sample tiny glass bottle and managed to put the lid on it but she wriggled out when I told her it was a silly thing to do. That was on 5 mg. And as I have other conditions this diagnosis + steroid effect is making me re-evaluate how I manage. Thank you for your observations.

Sweeter dreams Whomaytif

[Hidden]

Hi Whomay,

On 9.5mg I still have unusual dreams, but I have learned to put them away and get on with my life. Dreaming that one's family were killing each other was not a happy experience for me and took some getting used to, but after half an hour or two after waking up, I managed to forget these bad dreams and get on with normal life.

If I have helped you I feel so pleased. Your conditions are so much more complicated than are mine, therefore, you must tread your own path, but keep in close contact with your GP.

Pats.

[Whomaytif in reply to Hidden]

The path we tread. The dose of med when side effects spread. If we get out of bed and the sun rise glows red let the joy of beauty help us instead. However complicated conditions are is it not a matter of how we perceive ourselves?

So this morning we are dolly elves sitting on our jolly shelves with PolyM but still ourselves.

While it's not in my nature to become a trappist monk I suppose any condition that afflicts also weakens people where they are vulnerable.

Acceptance and enough rest must be best.

So thank you - you and others have helped.

[Lawrie]

Hi Whomaytif,

So sorry you are experiencing these symptoms. I have not had the light and noise sensitivity. I did have problems on Predisone so my doctor switched me to Methylpred. I have been on Steriods for 11 months now. I know we all respond differently to meds. I pray you get some needed rest and sweet dreams.

Lawrie

[benedicta]

Sensitivity to noise and light and a very weak voice are what I used to get with migraine - perhaps there is a connection here?

I find Bowen Therapy helpful with pain in back etc. - info available on the internet.