Feeling low. Sorry to moan: Hi. Now 4 wks on... - PMRGCAuk

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Feeling low. Sorry to moan

Wraysbury
Wraysbury

Hi. Now 4 wks on prednisolone. The aching especially in my neck comes back and stops me sleeping after about 2 every morning. I can’t say it’s pain like before diagnosis, but a heavy ache that spreads down my arms and into my knees as the night wears on. I’m terribly tired and My emotions are everywhere. I keep looking at diets, any instant fix. Is it my fault I ended up like this? I desperately want support and have none. It’s all so hard explaining to any one and as I look so well, everyone thinks I’m better! Do u know yrs ago I broke my neck in a riding accident, I was trampled on by the horses behind and initially was paralysed down one side. All that as it was so visible was so very much easier to deal with than this. I’m sorry to moan, but I think only you people understand

34 Replies
oldestnewest

Vent away, it's a healthy reaction when life is crap.

So as you know I'm a newbie like you and this is the start of my third week on prednisone. Like you I've got the weighted, leadlike feeling that I've come to dislike. Last night the bedding felt too heavy. Tonight I've moved into a different bed with warm light bedding to see if it helps. Its 11pm here and I'm going to try and get through to 3 am -4am before taking my meds in one lot and hopefully sleep another couple of hours after that. I do feel just like you. I have no appetite however that is helping me eat a careful no sugar, no refined carb diet plus attend to low sodium and higher calcium foods. I chart my food on My Fitness App. At least I feel like I have a measure of control in that direction. I haven't had any wine either and decided to treat myself to an occasional glass. I'm not much help ready, except to validate the feelings...its like a bad dream. If we can hardly believe it I guess its not surprising other people cant. PS It is not our fault. I started getting led down that track too. Its not! Virtual hugs

Wraysbury
Wraysbury in reply to KinnearD

That’s a good point!! If we can’t believe it etc!! Hadn’t thought of that. Yes I’ve lost my appetite too, I lost a stone in a few weeks! I have to make myself eat. Thanks, in a funny way it’s good to have how I feel, verified! Good luck x

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Wraysbury,

Sorry to hear you still in a bad place.

After 4 weeks on Pred you should be feeling better than you seem to be.

Are you still on 15mg?

How are during the day? Does the Pred keep you relatively pain free?

I noticed in one of your earlier posts you took Pred at 6pm, but after advice from PMRpro said you were going to change to mornings. Have you, and has that made the night worse? If so it might be worth splitting your dose - 2/3rd approx am; 2/3rd before bed.

If you are struggling throughout the day as well as the night then maybe you are not taking enough Pred, or your body is not absorbing it as well as it could. If it continues you do need to have a discussion with your doctor - there is no point in just hoping it will go away. It won’t!

When you have a few moments to think properly jot down your problems, including emotions so you can take a sensible, easy-to-read resume for your GP to read - and then make sure he/she does!

It is very frustrating to look so well, yet feel so ill - it’s a place we’ve all been, and as you say friend & family question that. A broken leg gets much more sympathy.

KinnearD
KinnearD in reply to DorsetLady

Is there a recommended way to format summary of symptoms and dosages etc. Mine is all over the place

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to KinnearD

I used to keep a notebook and every night jot down details -dose, pains, feelings, activities etc.

Then once a week or so transfer that to a word document on PC picking out the significant bits.

That might sound a bit nerdy, but it does mean you can look back and see how things were, use it to remember things for doctors etc. Even in the best of times we don’t remember the minutiae of the day, even more difficult when we’re not well. Plus you can see trends, if there are any, and it makes you realise when you look at retrospectively how much you’ve progressed.

Wraysbury
Wraysbury in reply to DorsetLady

Thanks. Yes helpful answer and question

Hidden
Hidden

Hi Wraysbury

Following on from Dorset Lady’s Post ~ was your neck bad before the PMR? Also l think many illnesses can make you feel the old war wounds so that’s maybe why your neck is so bad?

There are options along side your Pred like Amitriptyline taken at night which relaxes your muscles, not for the PMR but for the old war wounds. My neck & shoulders were awful, even when I was doing well on the PRED for PMR but l’d had a ‘frozen shoulder’ & was working on a PC & holding myself awkwardly making my neck so much worse, Retirement cured that!........

Don’t look for instant fixes, if there was one this group would not exist! It’s not your fault you have PMR but this is the place to talk through your fears & worry’s, they are not ‘moans’ they are more statement of fact & we know where you are coming from, believe me!

Try a warm wheat pack, the sort you can put in the microwave but don’t over cook them like l did! 😂 House smelt like burning popcorn for days!

I am the pillow queen I bought dozens trying to get comfortable at night, so maybe Amitriptyline may help that but as DL says maybe you simply need a little more Pred.

Please don’t blame yourself or try to find a Cure on Dr Google! Rest, Relax & be Kind to Yourself!

Mrs N 💅🏼

Resting on the bed in France while the boys cut the hedge!

PMRpro
PMRproAmbassador

Does the night time pain improve once you get up and start to move about? Is your doctor SURE it is PMR? Has a spondyloarthropathy been considered?

Thanks guys! No I didn’t have any neck pain before PMR. The aches are ok during the day provided I do absolutely nothing really. One short walk with the dogs and neck is starting to ache. I think I just need to ring Gp tomorrow and ask re an increase. I’m scared of dividing the dose as that means ill be on an even lower dose during the day. I’ll call her tomorrow and see what she says. Thanks again

Wraysbury
Wraysbury in reply to Wraysbury

Oh no the night time pain doesn’t go it just gets worse until you take the Pred in the morning

Hidden
Hidden in reply to Wraysbury

Have you tried a simple painkiller ie Paracetamol? It won’t do anything for PMR pain but this may be something different? Worth a try at least x

Wraysbury
Wraysbury in reply to Hidden

!!!!! No!!!! Now I guess that’s common sense! As I knew pain killers didn’t touch the pain, I thought there’s no point. I’ll try it tonight. Thanks

Hidden
Hidden in reply to Wraysbury

GP may ask you that very question so at least you’ll know the answer, nothing like covering your bases!

Let us know how you get on!

Wraysbury
Wraysbury in reply to Hidden

Hi I took some Brufen and had a small supper before I went to bed. I had the best nights sleep I’ve had since this started, only woke once with mild neck and shoulder ache. I think the neck is tension and worry etc and I could have been hungry!! Thanks

Hidden
Hidden in reply to Wraysbury

That’s good to hear, try again tonight & test the theory! Sleep’s Priceless ~ helps you through the next day! 🍀

Wraysbury
Wraysbury in reply to Hidden

Indeed! Mind u the snack was a piece of cake, i Haven’t had carbs since starting prednisolone, so can’t do that every night!!!

Hidden
Hidden in reply to Wraysbury

It was a ‘Trial’ so you deserved a ‘Reward’

Sometimes we are so tense with the pain of PMR you can get referred pain in your neck & shoulders, so I’m pleased it helped. x

Wraysbury
Wraysbury in reply to Hidden

Thanks

Thanks I will.

I also have bad neck and left shoulder pain. It is the only pain I have, but it seems to be getting worse. The rheumy gave me steroid injection into my shoulder a couple of months ago, and I asked him if it would help my neck pain - he said it wouldn't. On the other hand he didn't offer any suggestion what to do about my neck pain. The injection must be wearing off now because of all the pain down my arm. I am loathe to increase my pred. to see if it will help because the pred. over 5mg affected me quite badly, and I remember I still had the neck pain and left shoulder and arm pain. When it is really bad I take paracetamol and that helps, but I really don't want to start taking pain-killers every day on top of everything else. My GP doesn't seem to want to discuss it with me - 'You're in the hands of the rheumatologist now', she says.

She has been my GP for 20 years and has always been good (probably because I rarely ever visited her), but since my lung cancer and PMR (particularly PMR) I feel she is short-changing me. Not sure what to do about it yet. I am also fairly new to PMR, i.e. 4 months and I am only just beginning to accept that I shall more than likely be like this now till my dying day, although I am still able to lead a relatively active life, but not the same as it used to be.

Sorry, haven't done much to cheer you up. I know I shall feel better and more cheerful tomorrow. It comes and goes! As with many of us I'm sure.

Wraysbury
Wraysbury in reply to Jemsea

Sometimes someone’s post makes you realise how u feel. I hope u can get it sorted out

Hidden
Hidden in reply to Jemsea

Hi Jemsea

I could shake these GP’s at times, they’ve no idea what it’s like to be in pain & often constantly! Neck & shoulder pain are extremely nagging & persistent, please don’t be afraid to take a paracetamol for other incidental or referred pain, in the scheme of things it’s a drop in the ocean!

When do you see your Rheumatologist again? I can ring my Rheumy Team any time if l have any issues, do you have that option?

I had a cortisone Injection last year in my shoulder & through my own Physio l’ve got full movement back but that was done by an Orthopaedic Guy & he said anytime it starts again, just ring for an appointment.

PMR just doesn’t sit in isolation, many of us have other conditions, muscular/arthritic/skeletal so just because we have Pred for PMR other things can still linger on, though some do improve & remind us when we start dropping again!

So please don’t suffer & if you have any questions just ask, l had to take my now Retired GP to task & took Darling Husband with me because whatever l complained of my GP blamed the Pred!.......

It’s not easy & your new at this PMRing Lark! Just ask & there’ll always be someone happy to help.

Best Wishes

Mrs N x

Jemsea
Jemsea in reply to Hidden

Thank you for the kind words MrsNails. I certainly got up feeling more cheerful this morning until.........

7am made some coffee (naughty), finished my coffee, 7.30am about to go upstairs for my morning peppermint oil bath, when I suddenly had the most horrific pain radiating from the back of my left shoulder, up the back of my neck and head and all the way down my arm to fingertips, fingers were numb. No it did not feel like polymyalgia pain. Didn't know what to do, just wandered about and worried my poor OH. and was just about to take a paracetamol when it stopped - just like that, after 15 minutes. left my neck and head hurting. Got an urgent appointment with locum GP - my GP is away this week - she was extremely nice and advised me to go to A&E.

Blood pressure was through the roof. She said it was a difficult one, because I was now okay, but nevertheless go to A&E for ECG and they would be able to tell if I'd had a heart attack.

Thank goodness daughter-in-law's day off work, so I rang her and she came over to take me to A&E - this was 12.30pm. Arrived hospital 1pm. A&E packed - she had to phone a friend to pick the children up from school. 2.45 had the ECG, nurse wouldn't/couldn't tell me the result, because I wanted to go home. Had to wait to see the Doc. 3.45pm. He asked me the usual questions and said I was to have blood tests and chest X-ray. I said I couldn't spend any more time, we had to get back to collect the grandchildren. I asked him result of ECG - he didn't seem to want to tell me, but said it was okay, but I must have bloods done and x-ray (looking for heart disease). Went across the road (not to radiology), but somewhere else for X-ray. We sat there for another 45 minutes, and I said, enough is enough. I don't want them to find out if I have heart disease. I can arrange for that some other time. I came only for an ECG and I hadn't had a heart attack. So we upped and went.

Arrived home about 5.30pm. My day today and my poor daughter-in-law's. If it happens again I shall dial 999 (the locum's suggestion when I saw her earlier) then we wouldn't have all the waiting around.

I wonder if this could have been some kind of trapped nerve pain. I know my own GP would like me to take more PRED, but the locum understood my reasons for not, and until this week I have been managing really well on 3mg. I think tonight I will take 4mg to see if it helps my neck. What a long, boring, garbled story. Sorry about that.

Thanks Wraysbury. Don't feel like this often. Do hope you can get sorted. It does actually get better with time. Wish I could be more help, but there are some wonderfully knowledgeable people on here who are more adapt than I when it comes to giving advice. I n

So I am not a PMR sufferer, but GCA. What you describe in neck and shoulders is more what I experienced, and occasionally still do. But Pred helps, and it doesn't too. On the plus side, it does seem to alleviate pain and allows for 'normal' life to continue, though when I was on very high doses in the early days, I thought I could just return to work and carry on where I left off. This was in days before I found PMRGCAUK or Healthunlocked. Big mistake. I started major pains all over again, and headaches and scalp sensitivity increased so back up to 40mg/day and off work for another couple of months with very stern warning to take it easy. Now lowering dose - and also started Methetraxate, though don't worry about that yet as it may or may not be something you get to! The down side of Pred was and still is that sleep is at best erratic and brain is doing 10,000 cycles/second, though physically body cannot deliver on all the brilliant ideas I have during the watches. I have learned that bed is for sleeping, so if I wake early and cannot go back to sleep, I get up, make a mint tea and sit at kitchen table reading a book (sensible one, not zombie killers or something that my kids read). I find I can gently slow down again and then return to bed for couple more hours if 'routine' allows. Try to avoid sleep catch-ups during the day as this won't help the night/sleep routine - remember we are diurnal creatures:-)

Good ideas in the forum about paracetamol, and diary for the GP. Also chat with your local group as they often have really good ideas too which never make it here.

Every day is on route to getting better, even if you sit in a layby for a few days/weeks, or even take the wrong turning occasionally. Just that this is not a Grand Prix race, but just the journey of life. Good luck.

Wraysbury
Wraysbury in reply to MarkWin

Thanks.

I have been on prednisolone since December 2017 and yes they do make you feel low and they are not very nice but they do help with your symptoms. One thing I would say is don't let your GP reduce them too quickly. I have had mine increased and reduced but have decided to just listen to my specialist as he is the most informed.

At the moment I am reducing very slowly and it does seem better although some days I feel better than others and I do need to pace myself. The specialist has said be patient it will take up to two years and even then I may not be off the steroids and have to stay on a maintainance dose. Don't expect too much too soon!!!

Wraysbury
Wraysbury in reply to 64Rusty

I’m in the uk and nobody has mentioned a specialist to me. Are y uk??

PMRpro
PMRproAmbassador in reply to Wraysbury

If you have "just" PMR and you respond well to pred and all is straighforward then you may never need a specialist. As things are in the UK you may have to wait months for an appointment and then they may suggest that if you got this far, you don't need to take up their time. Sometimes GPs are better than the average rheumy. But if there are any reasons for questions about the diagnosis or you have problems - you should be referred. And if there is even the slightest suggestion of GCA - consultant appointment as an EMERGENCY. No ifs or buts...

piglette
piglette in reply to Wraysbury

As PMRPro says with straightforward PMR a specialist is not necessary unless your GP has not got a clue, which does happen. You should be perfectly OK just sticking to primary care.

Hi: I hope you’re feeling somewhat better as I write. I was on 15mg originally and it did nothing. They upped it to 20 & still much pain. (And I only weigh 90 pounds!) I muddled thru with Tylenol & wine. I hope you’re getting more now. I split my dose (half & half - not that 4/3 thing. Take evening at 11 pm. I think the anti-inflammatory diet is the best & watch the sugar - the Pred makes you crave it. I adore The Pioppi Diet (by your British doctor).

Feel better - Catherine

Thanks x

Hi wraysbury so sorry your suffering I'm a lot older than you at 73, but initially started on this painful road approximately 18 months ago, I started tapering down in August I think! anyway I'm now down to 7m and in one more week I will go down to 6! coming off the predisinone has really improved my health,mobility and day to day improvement I'm hoping I'm not counting my chickens? to early! Hopefully you will follow my train everything else the depression mood changes and hopeless feeling is lifting I'm hoping future wise to be able to start my walking back and maybe Aqua, I miss my friends from classes as well as others as I'm stuck indoors, and they don't call etc., but I understand totally, like you said everyone says I look so well! Got my new hair piece and confidence back abit!! I will keep you informed of progress of the tapering, good luck to you as well😃😄

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