Polymyalgia Rheumatica And GCA :: Unable To Sleep Some Nights
Feb 11, 2016
Thank you for answering me. Are you in Australia? am having problems finding anybody with this disease in Australia. I was diagnosed April 2015 and have been up and down on prednisone, now on 60mg, blood test tomorrow hopefully will be tapered down slowly, all depends on results.
I have Glaucoma and high blood pressure caused by PMR and GCA, suffered many headaches for 9 months, seem to be okay at the moment on 60mg, having trouble sleeping some nights, wide awake which is a bit of a worry. Now using a steroid drop on one eye because of having a completely red eye for 6 weeks, drop has helped and taken redness away. No pains in limbs etc at the moment on this high dose of predni. I found my GP knows very little about this problem, though he is willing to listen to me and discuss things, we are finally coming to some understanding, I told him I am contacting Forums to learn what I can about PMR etc.
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Insomnia kicking in! I've been on Pred for nearly a month and I'm sure I'm anaemic, has anyone suffered the same? I'v put my lack of energy and tiredness and fussy head down to the pred or PMR itself, but the colour of my skin is so pale and when I pull my eyelids they are pink not red!! Any other problem by the looks of it! So fed up with this and it's only been 2 months of PMR, I WISH I COULD SLEEP FOR A FEW YEARS UNTIL ITS GONE,
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Many of the discussions on this and other forums lead to comments on of prednisone and sleep. I just wanted to point out that medication affects each of us differently. I started on 40 mg of prednisone and definitely had problems staying asleep. Although I didn't like the idea of sleep aids (side effects and addiction) I succumbed to the recommendation of my practitioner to take 5 mg of Zopiclone. It worked and allowed me to get at least 6 hours sleep each night. I had no noticeable side effects to the Zopiclone. Five months later (after a relapse and return to 40 mg at 2 months) and at 30 mg I was experiencing excessive brain fog and fatigue throughout the day. At the suggestion I switched taking the prednisone to the evening around 9 PM. When I did it I thought, what the heck, if the steroid is causing fatigue I'll drop the sleeping pill. I did and have slept fine since! Mind you I'm up every hour and a half or two hours to pee, but I go back to sleep. Frequent urination in the first 8 hours of taking prednisone is one of the many side effects I suffer.
So I guess the message I'm sending is that we all react differently to different medications. It's wise to remain flexible. What doesn't work for one, may work for another.
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Is it normal not to be able to sleep or feel sleepy at all around 10 11 weeks?? Any advice on how to get around it??
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I have been diagnosed with hepatitis A 10 days & now am recovering from it but for the past 10 days am not getting any at night I could sleep for atleast an hour continuously is this a symptom of this infection ?
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Whenever I try to sleep at noon, my heartbeat's sound just happens to increase for me. And I am then unable to sleep. Please help me.
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Is it common to not be able to sleep during pregnancy? I'm only 10 weeks and I'm irritable when sleeping.i can't sleep in the same room as my husband. But also any little noise is disturbing me. Because of lack of sleep I'm an emotional wreck at times. I don't know what to do....Can't even take sleeping pills.
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I have a horrible time falling asleep, i almost always have to have a TV on to listen to and concentrate on in order to fall asleep. 90% of the time if i shut off the tv within minutes my mind is racing over negative thoughts. People i hate that have wronged me, lost loves, revenge I would like to have, then the next thing i'm full blown angry, heart racing and no chance of falling asleep. Its always just something random, worry about bills, worry about a better job, think of someone i hate/that wronged me. Once i fall asleep im usually good, its just so hard to get there. I cant shut my mind off. Ambien is a joke and does nothing, same with valium, i will chew up 3-4 off the shelf sleeping pills and sometimes that will put me out. The only times i have ever fell asleep well is all drugged up. Like a big ole xanax or so drunk i pass out. I just wish i could close my eyes and fall asleep, but as soon as its quiet my mind goes 100mph.
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It gets to the point where you know you need to stop, but the thought of stopping is a major step.
Two weeks ago, I decided that enough was enough. My three bottles a day habit was starting to get out of control. I would wake up in the morning and my husband would ask me if I was okay. "Yes of course I'm okay. Why?" "Because you fell over last night." The blackouts were starting to scare me.
Sunday I decided that I would start tapering off the following day. Luckily I have a supportive husband and admitted my problem. He bought me very small lagers and printed out the tapering off method from the internet.
Monday: I had the shakes in the morning after three bottles of wine the day before. Luckily I work from home. I had six beers and stopped myself from buying a bottle of wine in the evening. Really bad sleep, nightmares, palpatations and a constant craving for what I knew would help me.
Tuesday: Didn't really wake up okay as I hadn't slept much. Started work. Had four small beers and didn't crave for wine in the evening. I felt shaky and strange. Went to bed and slept for three hours which was unusual for me.
Wednesday: I woke up feeling different. Almost human. I got loads of work done and didn't want a drink. I had one small beer with my dinner and went to bed. I slept for about four hours, had some water and went back to sleep. Amazing.
Thursday: Well I've been a good girl this week. I'll treat myself to a glass of wine. Big mistake. Two bottles down.
Friday: We're going away this weekend. I could just not drink during the week surely? Another two bottles of wine. A few shots at the local........
A week later I'm back where I started.
My problem is that I am scared of stopping. I now know that I can get through the tapering off method without life threatening withdrawals but I contradict myself constantly. My mum has Alzheimer's. I'm helping her, so I need a drink. Oh, I've had a bad day so I deserve a glass of wine, or six. My child is disabled. I deserve a drink because I've had a bad day. The cycle is endless.
I went to the GP yesterday and cried. I told him (it was a locum) that I had a problem. I explained that I couldnt sleep without a drink. I have nightmares (because of my PTSD) and my stomach is playing havoc with my life. He said, "Obviously you have IBS." I said, "Obviously?" He said, "Well yes. you don't drink enough for it to affect your stomach." I walked out of the surgery saying, "Well thanks anyway."
Sorry for the long post but I am really trying and wanted some advice/encouragement to try this tapering off again next week. Does it work? Has anyome done it successfully?
I have already applied to be a patient for a different surgery and will be honest with them too. Hopefully they will point me in the right direction.
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I have been going through a second flare up and dermovate is not working. Now been given protopic as not responding to steroid creams. I need advise on the itching which is literally driving me mad and the lack of sleep is interfering with my work now any advise on creams, diets etc!
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I m 19. I m the type of person well I used to be the type of person who would wake up with the biggest smile at 2am... But recently since the past few months it feels like everything s changed. I find it so hard to go to sleep - I be tossing and turning in bed till 1-2am, and I find it hard to wake at 10am (I honestly have never been able to sleep later than 10am) but recently I ve actually had to force myself out of bed, coz I feel that tired. I feel really less motivated recently too, it feels like I'm going to get nowhere in life even though I'm working really hard with everything I want to succeed in; whether it's my education, whether it's losing weight etc.
I ve been feeling kinda down, sad and lonely lately too. It just feels like I've got no one - I m all alone. I m a very cheerful person and I never felt like this before. I do not have any siblings, I ve got loads of relatives/cousins but I barely get to meet them/talk to them. I feel lonely... Feels like I've got no one.
I suffer from PCOS which makes things worse - like all the excessive hair growth, weight gain, acne etc. It feels like I can't cope with it anymore. I just fake a smile. I cry within.
I just don't know what's wrong with me. I told my mum once and she just started laughing and say you ll be fine, but she doesn't know how I feel! Like I can t explain how it feels, I can t explain it to myself either. I feel lost. Completely lost.
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I love fruit and eat plenty,also i have Manuka honey, my question is as we have to be aware of diabetes should we be aware how much we eat, does our body process natural sugar in a different way to processed sugars.Just a thought, been awake and up since 5.30( and was hungry so thought have some fruit before breakfast then thought am i having too much)
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I've been experiencing some aches and pains over the past few days, it started off with aching in my wrists up to my elbows, now my joints in my legs and ankles are aching, also a bit of a stiff/ sore neck and top of spine is sore. In general my whole body is aching, feels sore to touch, throbbing and from time to time can get sharp pains. I don't have any rash as yet.
I have been in contact with chickenpox lately so didn't know if Id caught anything from that at.
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I was thinking about PMR and although I am very nearly stable on 10 mg Prednisolone it is a knife edge dose. I still have many side effects from 4 years use of the steroid. In some kind of order they are:-
Muscle wastage, fatigue, lassitude, thinning of skin, easy bruising, cuts which take an unusually long time to heal, glaucoma, dry eye, exacerbated and premature cataracts which necessitated operations on both eyes to replace the lenses, virtual permanent stiffness and loss of motion in neck, constant shoulder and back pain, balance problems and now a recent discovery which I believe to be bronchiectasis. The last manifested itself with a slight productive cough I have had for about a year, with a shortness of breath which is steadily getting worse. Initial exam by GP showed no ‘crackle’, X-ray was ‘normal’ blood ‘normal’, whatever that is. Have seen this GP who gave me a course of amoxicillin (5 days) which did nothing. Then just left me to get on with things, no follow up, nothing. Not sure what to do next. I can see any one of the other doctors at this particular practice and am thinking to see one of them soon; well at least I can try for an appointment, currently 2 weeks!
Now the latest manifestation…..Shingles. Or to give it its proper title
Herpes Varicella-Zoster. A particularly painful affliction caused by the chicken pox I must have had as a child. It has affected the left side of my scalp, my left forehead, eye and face; I am not a pretty sight! By the time I knew what it was it was too late for any anti viral medication so will just have to let it take its course. Existing on Paracetamol, Codeine, Neurontin and the occasional Tramadol. All of these analgesics are for a short time only, don’t want to get hooked. Managed to see a doctor reasonably quickly about my eye who sent me to the eye unit at my local hospital, ophthalmologist examined the eye and gave me the all clear, phew!
On top of all this I have the daddy of all flares I put the cause of this down to the trauma of my new affliction. My immune system is compromised due to the daily use of 10mg. Prednisolone which I have increased to 15 mg. for a short time. It appears that any kind of trauma either emotional or physical will set off a flare.
I wondered what causes a flare in other sufferers from PMR/GCA and do they do as I do and increase the dosage of steroid and try to rest? Or is there a magical cure I should know about?
Long ramble I know but strangely feel better for writing it, apologies if you think I’m wasting your time, or a hypochondriac. (I’m not).
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To my knowledge I have never had chicken pox. I have been taking Pred for three years and am now down to 3mgs from 15. My granddaughter is with me with chickenpox. Should I be worried please?
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I was told years ago i haf fibromyalgia but now my blood work shows a high sed rate
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Background: I am 66 years old and have suffered first attack in mid November 2015... I have been fairly active person and have done some triathlon in the past, so not being able to get out of the bed on my own was pretty shocking to me... It took about one month to diagnose PMR and I started medication (prednisone) at 15 mg/day mid December.
If there is an interest, I would like to post about the progress in recovery, with special attention to exercise. I am seeing specialist every 2 weeks and complete blood work is done to monitor inflammation caused by PMR.
I would like to post what I have done thus far and future progress in (hopefully) successful recovery.
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Has anyone tried Q10 supplements, and are they alright to take with pred.
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I have recently had blood tests again and have a low esr. I have symptoms of pmr and discussed these with my gp. I begged her for prednisolone and she reluctantly agreed but only one week. I felt great! I was walking normally, getting out of bed for the whole day where I was bed bound a lot before, just felt so wonderful having so little pain in my hips and shoulders. My blood tests came back normal and she said she cant give me any more and is referring me to rheumatology again. The pain has come back, my hips are crippling me my shoulders are so so painful again and nothing else has worked, just the prednisolone. My orthopaedic specialist may give me one more injection in ten days, vpbut that will be the third and he said 3 is the max so I should have relief for 3 weeks, if previous injections are to go by but after that.
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For the last week or so, I have been getting short of breath, and very dizzy, feel like I am losing my balance, and my heart is racing. I have never had panic attacks, and this seem to start strangely enough when I have been reading....and then the weird feeling lasts the rest of the day.
Is it possible it`s the 11 mg pred I`m on? (have been for 4 years) Just can`t pin down what`s causing it! My blood pressure is ok....not diabetic...
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I am wondering if gum inflammation is related at all to the PMR, GCA. I will see the dentist in a couple of days. Thanks.
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