Trying to deal with mood swings with pmr
Posted , 8 users are following.
I have pmr for 1 year now and down to 4 mg perdnisone. And methotrexate. But sometines I get up in the morning and feel so low. I have some pain in the morning so am used to that and it does seem to go away somewhat. It is hard for my family to understand why I am so down and fatigued am tired of having this pmr. I feel they think I am making this up not that they say it but it is in my head. Need some feedback from you if possible. Thanks ahead of time to any answers I get.
3 likes, 12 replies
pat38625 marilyn79703
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I have been a very strong independent person most of my life. I managed ME the best I could and most times I forgot I had it but not in the early days. Having to ask for help from my sons is killing me. I cannot carry a bag of groceries from the shop to the car without my arm muscles pulling and aching. There are days when I don't feel too good. Your family are probably used to seeing a totally different person now. I am the same. I could walk 4 miles in just over 1 hour not all the time but I could have and now a year later I cannot walk the length of the street that my calf muscles hurt. I am not used with this. Stick around this website and you will get through it. You cannot make your family understand and there is light at the end of the tunnel, I have to believe it. Acceptance is half the battle. Good luck Pat
marilyn79703 pat38625
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pat38625 marilyn79703
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No energy, no motivation unless I have to, brain fog, memory loss. Will start to say something and then forget what it was I started out to say. I think also that we grieve for the person we used to be. She may or may not come back. We just gotta roll with the punches and do you know something most times I feel Blessed. I am alive and breathing. Pat
marilyn79703 pat38625
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pat38625 marilyn79703
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christine_fay marilyn79703
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It's my life , whats left of it, and my body which I have looked after well despite chronic Auto Immune stuff that started as soon as I first took Omneprazol... I never made the connection because the heartburn relief was so good. I had no idea that it stopped absorbsion of essential vitamins and minerals... especially Vit B12...no wondermy energy levels went down to nil.
I know this bloody nightmare of PMR will go...I am determined to get through it. Dont be afraid of the Preds...one day you will not need them. I already had developing cataracts but noone told me of the possibilty of acceleration on preds...only the osteoporosis... but hey the Omneprazol is far worse for that so hopefully now I have stopped I wont get it... Having fallen badly so many times in the past five years I have not had any evidence of weak skeletal system! I am 71 by the way and still working and travelling all over for that. The worst time was last November when travelled to Sweden and had to use a wheelchairwith assistance from the car park to the plane and back... It can be done !
On Saturday I am off to Ireland for work and will be parking in the long stay and getting the bus....I could not have done that in the past 6 months so please don't give up hope...Also there are some great corsets you can get to give your midrift some support when the pain gets you there. I also use those gellice packs that go in picnic sets for any pain areas...much betterthan heat. Wrap them up in a soft cloth or you will freeze your skin.
TERI23 marilyn79703
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Teri
marilyn79703 TERI23
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Mrs.Mac-Canada marilyn79703
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Sorry to hear you are having such a tough go of it. I have been on pred for over 2 years and after trying a decrease from 4 to 3.5 have suffered a flare that has be back at 10mg. Like everyone else that is in this position I hate taking prednisone. I was borderline for meds for glaucoma and have had to go on them but other than the wonderful weight gain I haven't had any real problems. The only time I do is when my dose is too low. I agree that maybe you should increase your dose a little to see if you get better. I think at our age (I'm 65) quality of life is the most important thing and a little more pred isn't going to be the end of us.
I will say that I need my rest in the afternoon then I am pretty good to go till bed. Some days, especially when the weather is a constant drizzle and grey, I get a little down but I find a good book that will make me laugh and I'm OK.
Hope you are feeling better soon and don't forget you are not alone. This is a very big club
Hugs, Diana
ann57025 Mrs.Mac-Canada
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had a couple of scares, got down to 15 mg, then scare with blured, double vision and the pred up to 50 mg in Nov, currently on 24 mg, doing it slowly as Eileen suggested
Just been to eye specialist and the pressure behind my eyes has gone up considerably since tested in November and have been prescribed drops to bring down the pressure, this is all a bit scary
thank you to all on this forum, puts everything into-perspective
Ann G
EileenH marilyn79703
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Reducing the pred is aiming to find the lowest dose that manages your symptoms acceptably - it is not an aim to get as low as possible whatever. I have had PMR for 10 years - for 5 years it was not diagnosed and i managed better with no pred than you sound to be doing on pred. There is no point at all taking pred unless you take enough to feel reasonably well. It won't make you the person you were pre-PMR but it should make you feel failry well. If you can't do the cleaning - then so be it. I can't clean - I can do a bit but not very much. I live with some dust - it is very patient, it will always wait! If it is unacceptable then my husband has to pay a cleaner or help. You shop at a supermarket where you can take a trolley to the car - you don't carry anything more than a cup of tea.
There are people who were off pred in less than two years - it is estimated about a quarter of people get off pred in that time but they are at a much higher risk of a relapse. About half take up to 4 to 6 years to get off pred and the other quarter are, like me, on pred for along time, sometimes for life. I'm finally down to 4mg but it has been a rosky road.
However - I feel well, my memory is back to normal, I can walk for a couple of hours at my pace - short distances I can walk faster, longer distances I have to pace myself. But that is the key: PACING. You cannot carry on as you did before. You don't expect to do that if you have flu or if you have had an operation. You have to recover. And you have to be patient. It's tough, I won't deny that. But you will have a far happier life if you learn to accept that, for the moment at least, you are subject to limitations and learn to adapt instead of fighting it tooth and nail. Fighting just wastes energy that can be far better used elsewhere.
It is difficult for everyone, you are not alone in that. Follow this link and you will find sites with a lot of info and a lot of others in the same boat as you:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
The northeast support site has a DVD for members called "You are not alone" which explains PMR and how it affects us for patients and families alike.
But above all - you need to find a dose that gives you more relief. Methotrexate may work - but the majority of people find it doesn't make much difference in the end. They get to a lower dose of pred yes - but then they have a flare or the side effects make them feel poorly. The original evidence was failry equivocal: one study said it helped, one said it didn't, one didn't know. The most recent opinions are it doesn't make a lot of difference.
It WILL get better - but at a year it is a bit soon to be honest. I'm sorry to sound so hard - but doctors are all too keen on telling patients "you'll be over this in a year or two". The reality is that the patient who is off pred in a year or so is the exception, not the rule.
LisaCACO marilyn79703
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