Depair

[Sandradsn]

I feel weird,.not like me at all. On 10 mg Pred for 4weeks now,started off on 15 at the beginning of January.I feel exhausted and irritable and full of depair.So is it the Pred or the PMR making me feel like this?I'm not in pain,just move slower these days.I work full time in a stressful job.

[leeman49]

Sorry to know you are not well. PMR does make you feel tired. I am a new PMR sufferer and was diagnosed in March. I was in pain before Pred and fall asleep anytime. I am on 15mg waiting to see GP for the next move in a few days time. I am not in pain now like you said move slowly. In the past two days I managed to get on the body trainer to do a bit of exercise. So far so good. I did that three weeks ago and I was stiff all over. I am 66 and retired. Very sorry you still have to work and is not easy with PMR. You will get better and don't push yourself too hard. Good luck. 

[S4ndy]

I am new to this group too. Sorry to hear you are suffering.  I have just started steroids and been in them for a week at 30mg. I have experienced every emotion from elation to despair in the last 7 days. I am 54 and first suspected of having PMR when I was 46.  I have struggled to maintain my business as I am self employed and for the last 5 weeks have been unable to work.  The irony is I am actually a Extend exercise instructor for over 60s and anyone younger with a disability or chronic illness! Add to that I suffer from Seasonal Affective Disorder and have bouts of depression to contend with too.  Therefore, I just wanted to say, I do understand what you are going through.  The last week has been a challenge but I no longer have the throbbing burning ache in my shoulders, neck and arms that has been my companion for a long time. I am having a few other side effects too but beginning to see a chink of light shining.  I have been following the posts here which have been invaluable support this last week. I am a long way off working at the moment, it is devastating but taking time to heal is totally necessary.  

[Rose54]

Hi

Sorry you are feeling so bad

I think we all find this illness makes us all slower

I to work full time but find Im better the days I work I put this down to not so much physical exercise days I work.

I walk down the road and think I am going fast but when everyone overtakes me I know Im not.

Preds made me fill so ill to start with I felt spaced out as though I was intoxicated and as for tired I was not sleepy tired but body tired .

I would get up at 7.00am and not be able to get dressed or do anything for most of the day .I did have 4 months off work and for at least 3 of them hardly did a thing I think that is what my body needed to start healing .

Its hard to come to terms with a long tern illness as it does change your life so much  but it does get better be kind to yourself it will get better .

Could you have some time off work just to have some time for you .

Best Wishes Rose

[Caro12line]

Sorry to hear you are feeling so sad.  I have been on Pred for 15 months and have gone through roller coaster emotions.  I think it is part Pred induced but also the phycological effect of being diagnosed with a chronic illness.  I struggled to come to terms with that and how my life had to change.  I found great comfort and advice from this group.  Knowing "I'm not the only one" and getting practical help here has been wonderful.  I still work and it is a struggle.  I seem to have to rest only to be strong enough to work and that leaves no time for my family and friends.  X

[Judigardener]

I started off on Pred at 40mg -- and the first few days I was all over the place. Elated at the pain easing but weepy at the drop of a hat. It stabilised. I find I am very irritable most of the time these days -- not sure why. Hope you feel better soon.

[Celtic PMRGCAuk volunteer]

Sandra, unfortunately feeling "weird" is how many of us would describe our early days with this condition.  It is in part due to the inflammation coursing through our bodies and in part to the steroids themselves.  When you read through many of the posts you will see that you are not alone with either the exhaustion (many coin the word "fatigue"), or the irritability and feeling of despair.  My emotions were all over the place both in the days before and after diagnosis, especially when on the high steroids doses from 40mg.  We certainly can't fight the fatigue which I found can so suddenly strike that you feel the need to just sleep wherever you are.  You just have to learn to take each day as it comes and go with the flow, giving yourself plenty of TLC along the way.  Working in a stressful job will certainly not help at this time, and many of us take our hats off to those of you who have to work especially during the early days of PMR and/or GCA - is there any chance that you can take some time off until you feel better?  Some people have found that they improved when they did this and some find that returning on a part-time basis at first and gradually building up their hours again can help.  A positive is that you say you are not in any pain but do be careful not to overdo things on any one day just because you are out of pain as PMR has a nasty habit of coming back to bite on the next.  The steroids are not curing the condition, they are just damping down the inflammation that causes the pain until PMR goes into remission and that can take anything from two years upwards.  Also, don't be tempted to reduce the steroid dose too quickly, the slower you go, the better - small decrements can trick the body into not noticing the withdrawal.  So to sum up: lots of rest, lots of TLC, only reduce when your symptoms and or blood test results allow and avoid as much stress as you possibly can.  Good luck. 

[DorsetLady PMRGCAuk volunteer]

Hi Sandrasdn,

Sorry to hear you are feeling so bad. Think it's down to a couple of things - your reduction from 15mg to 10mg in a couple of months is probably too fast. The Pred needs to get the inflammation in your blood vessels under control firstly, and then keep it under control as you reduce. Although most of your pain goes quite quickly that doesn't mean you are cured - there is no cure, it just controlled, so you have to do your bit as well. That means reducing slowly enough to ensure inflammation is kept under control, and, more likely in your case reducing stress and giving yourself time to rest!  Not easy I know, but PMR just thrives on stress - in fact I think that's what causes it in the first place for many people. 

You need to make sure your work colleagues, as well as friends and family, realise this is a serious illness, it won't go away in 10 mins, and you need to manage it - not let it control you, which it is at the moment.  Sorry if that sounds a bit harsh, but as Rose rightly says you have to come to terms with the fact this is a long term illness, and adjust your life according -that doesn't mean don't do anything, nor does it mean you can carry on as before. You have to learn to balance things. Once you do that, then you'll find you can cope, so don't despair, just learn to say NO - sometimes. You need some me time and TLC. 

Good luck.

[Shastring]

I  am also irritable, short tempered and jittery. I do not work so what's my excuse, I believe it is the pred after All I read about it. I'm so wired at night  and tired during the day. Feeling sluggish also where as I'm usually so active so I push myself to take Ali and keep active. Definitely a different me since starting the pred almost seven weeks ago. The fact that you have a stressful job probable adds to all this so take care of yourself. The one thing I'm finding hard to cope with is that I have to wake up at five am to take the Meds with a lite bite then I can't go back to sleep so that's making things worse. Take care and good luck!

[Sheribrim in reply to Shastring]

In case it helps I split mine 7am in morning and 7pm . Not sure why you have to be so early? It must be so counterproductive when tiredness is as a result of this. You need all the energy you can get .

[Mischevious]

Sorry to hear you are not so good, I hope adding my experiences will be of some help.  I, like others here, have experienced a range of emotions.  I know that I am irritable at times and am so grateful for having an understanding and tolerant wife.  The understanding of family and work colleagues is a great help and I have explained my situation to them all so that they are aware of the reasons.  On a positive note, time does help as the medication controls the symptoms and you are able to reduce, but, do go slowly.  I was diagnosed four years ago and was so pleased with myself when I had reduced to zero in two years only to need to go back to the steroids after four months.  The very slow reduction is not so slow if it works, which I can now say that it does as I am now down to 2mg without experiencing any problems.  I am not Mr Angry so much now so please take encouragement from those of us who have been where you are and come through it, but do not try to hurry the process, just go with the flow. 

[Runrig01]

Hi, I too have a stressful job, I work as a ward sister on a busy orthopaedic ward. The work is heavy, I do 3 X 12.5hr shifts a week. I am fortunate in that my colleagues have a better understanding than most. I still find some days challenging, but the team I work with are so supportive. I also found Occupational Health excellent, they have limited me to a maximum of 2 long days together, followed by rest days to recover. They also made me excempt from night duty. With these restrictions in place I manage. 

My husband and daughter do most of the housework to ensure I do rest when I'm off. 

The fatigue gets better,  as you learn to respect your body, and accept this is a long term illness. I have had pmr 4.5yr, and GCA 3 yr (although only diagnosed 1yr ago), and I still have times I overdo things and pay the price, but not so often. Good luck with your recovery. 

[PMRpro Ambassador]

All been said already really - but I can say "Yes" to the question is it the PMR or the pred? You can't really tell. 

As Celtic explained, PMR is just the name given to the symptoms of an underlying autoimmune disorder. Physically it causes your immune system to attack the body tissues as if they were "foreign", causing inflammation, and that leads to poor blood supply to muscles which makes them intolerant of exercise - you get tired easily and take far longer to recover. The pred reduces the inflammation and, as a result, the swelling that leads to the pain and stiffness. But the real illness is continuing in the background. Whenever you are ill, even a flu or a cold, you often feel rattier than usual. Any pain and tiredness makes it worse - and it has been going on for weeks, it drags you down.

Those of us who worked with PMR can identify with stress making it worse - I've been in tears after a perfectly normal phone call and add in an element of stress that you can't control easily and it is far worse. Taking that as a baseline you add in the only available means of "managing" the illness symptoms: pred.  Amongst the side-effects are psychological effects which lead to irritability (even more) and mood swings (even more). Depression is also often a part of autoimmune illness - and pred doesn't help.

If you can't have some time off work or have your duties lightened, then maybe asking the GP for some help with the depressive mood might be a good idea. Some occupational health departments will be very helpful with workplace assistance and shorter hours. Though of course, going part time and still having the same duties won't help at all! You have developed a chronic illness - and there is no end in sight that anyone can realistically prognosticate. Maybe you will be lucky and it will be all over in 2 years - but you could equally well line up alongside me, still here with PMR symptoms if I reduce the pred too far after well over 10 years. Normally it doesn't stop me doing what I need to do but I wouldn't want to have to do a high powered job even if I don't hurt and can walk OK. I probably am a bit slower than the neighbour of the same age - but I'm Speedy Gonzales compared with a few years ago! 

Living with chronic illness can be very hard work - resting and pacing become essential parts of life. So do investigate help from the GP - it might be little more than needing some counselling to help you adjust - and from your employer. GCA is covered by disability legislation and PMR is usually included too.

[mikldiamond]

I have read all the responses to your post and I see you are not alone in any way.  My experience has been different in that I feel concerned about dealing with PMR but mostly very good and positive that I am so much better because of Prednisone.  I wish you well and I hope you can see through this forum there is light at the end of the tunnel. Hang in there.

[lesley2015]

Hi Sandradsn

I  think most of us will have asked that question at some point. The condition and Pred, often make us feel like we are not ourselves, both physically and emotionally. I have gone from being really active, even struggling through pain, now to being more comfortable, but slow and tired. Always and upbeat person, now my mood can change by the minute from irritable to tearful.  I also work which is a challenge, I have taken two spells off work, one 6 months into treatment for a month, then another month, two months after that. I have now reduced my hours which has helped. My job is stressful too, and this certainly does not help and a particularly difficult week takes its toll by the weekend. 

With PMR and CGA, I  started on 40mg, June 2015, currently on 20mg and sill trying to taper down successfully!

Be kind to yourself, it is really life changing - a condition most of us had not even heard of until diagnosis! 

[1Purplecrow]

Hi Sandra, take a deep breath and hear this message. You have permission to take care of your self. PMR  and prednisone will toss you lots of challenges, including emotional meltdowns, physical exhaustion, and pain that stops you.  You will survive. 

These symptoms will pass, and you will become more at ease with the day to day experiences that meet you with your morning coffee. Do not dispare. Do not give up. 

I was shocked to experience aggressive feelings, anger beyond my comfort zone, and out of control feelings that are not normal for me. When I asked this forum for advise, I found that my feelings were normal, given my PMR disorder and prednisone which I needed to manage the symptoms.   

You will move through the weirdness you are feeling, and find your own balance. This disorder is not life threatening, but it is life changing. 

The best advice I received was to relax, take care of myself, and not to let others govern how I manage my day to day needs. Take a nap every day, can be 30 minutes or 1 hour, but protect your right to do that!! Also say NO when you are asked to do things that demand your time!  You are permitted to take care of your needs first. 

This is not how we are trained, but PMR requires we put ourselves first!! 

Take care of you, you will recover, and be well again. 

Kind regards, Jerri 

[Klammer]

Sorry to hear you're struggling.

I started at 15mg in October now down to 7.5mg. I think it's a 'better days and worse days' kind of experience and different for each individual. Recently I have noticed more of the anger/irritation/anxiety/brain fog that people speak about. But at the higher dosage, I didn't really experience this. Interested to read from PMR Pro above that colds/flu can make things worse - have just had one!

This forum is great to get more information and reassurance, as you go along the journey in my experience.

Best wishes. 

[Sandradsn]

Thank you all so much,it's a relief to know there are people out there that understand! My husband is about the only person who is sympathetic to the pmr.He does the housework and is always looking after me when I'm at home.He looks at me sometimes when I'm staring into space and says''I feel like I'm losing you''!!.

I work in a manic NHS dental surgery and work 10 hour shifts.I started feeling ill inside? about a year ago when I was doing 52 hours a week.I now do 40/43 hours!! I'm 62 and was expecting to be retired at 60 but now have another 2 years.We have no private pensions.

I had 4 weeks off just before I was diagnosed with Pmr as I couldn't lift my arms or hardly walk.When I returned to work they thought I was all better.The people I work with are very difficult and can be nasty if I have a Dr's appointment.I can't see myself getting better while I'm still at work,I'm dreading going in tomorrow!

[HeronNS in reply to Sandradsn]

It sounds like your work situation is untenable.  I suppose it is an independent clinic, there's no union or staff association?  Is there any individual who might be on your side, so to speak?  Someone in whom you could confide and enlist their help in getting the other coworkers to understand that you have a chronic illness, an invisible illness (just like diabetes is chronic and invisible), an illness that worsens when you are under psychological, not just physical, stress.  What a pity that in this fast-paced modern world it seems to be so hard for many of us simply to be kind to one another.

[Sandradsn in reply to HeronNS]

Hi HeronNS,

There are only 6 staff and 2 dentists.My manager understands but she is unable to stand up to the others!We have a mother and daughter working together so it's not ideal.

 My dad used to say to me when I was young ''Treat others how you would like to be treated''

[HeronNS in reply to Sandradsn]

Oh dear, not good.  What kind of support can your doctor give you?  Obviously your coworkers don't "get" the chronic nature of your illness and that your medication is making you functional but not curing you.  

It sounds as though these are not people you normally socialize with, they are not friends on any level.  Is there a way that you can try to flip their perception of you?  I don't know you or them, but sometimes people do behave badly towards others not out of ignorance or malice, but more because they feel threatened for some reason, however unlikely or unwarranted that might be.  Could your sympathetic manager help arrange some sort of social get together after work, like a drink at the local pub or an inexpensive meal, perhaps to celebrate someone's birthday, anniversary of the clinic opening, some other milestone, or another useful excuse?  Or is that completely off the wall?

[Sandradsn in reply to HeronNS]

Thank you for your help,I'm going to talk to my manager,she is really nice .The mother is on holiday this week so things might not be so intense.Our hygienist was talking about a meal out soon.

[HeronNS in reply to Sandradsn]

Sounds promising.  😊💚

[S4ndy]

I know that feeling of dread very well.  I think you may be better served making an appointment to talk things over with your GP if you are feeling so bad rather than trying to go to work.   I am in my fifth week off now and finally starting to be gentle on myself. I finally did explain to my gp how I was feeling and got help. Its devastating as I have always worked but it has taken weeks to realise I was stressing myself out over trying to carry on regardless. Its taken me months to decide to take the steroid until I no longer had a choice as I couldn't function.  Its difficult and financially challenging and if you also have no support at work must be so hard for you.  Hope you can find it in yourself to give yourself a chance and administer some self love.  Its not your fault, its an illness x

[Polywotsit PMRGCAuk team member]

Hi there, what a lot of wonderful replies! So much good sense and empathy from people who know what you are going through.  In my own case, I started on 20mg of pred, got high as a kite, and then plummeted into a nervous breakdown after a month. My work situation was horrible, just horrible, and years later I am kind of grateful to PMR for making me realise that I just couldn't carry on at that pace and with those nasty people.  Nobody mentioned that I might have had a touch of steroid psychosis.  I was pretty small, just around 8 stone, and I think I was taking too much pred, which added to my stress tipped me over.   Since then, the guidelines have been adjusted to a starting dose of 15mg.  If you are tiny, you might need less: if you are bigger, you might need more. 

Please reassure your wonderful husband that he isn't losing you, that you are just a bit absent for a while, and that things will soon get back to something resembling normal.  The first six weeks or so after diagnosis are very challenging. You need to come to terms with having a long-term illness, and understand that there is nothing you could have done to prevent it.  Take care of yourself.

Kate

[Sandradsn in reply to Polywotsit]

Thank you Kate,yes I am so grateful to people on here that have replied to my post.It helps so much knowing that others are going through or been through this journey.I am having trouble admitting that I have an illness,I'm usually strong ,organised and have it altogether!!I hate the stress of it all.

ps.I'm not tiny..10 st 7lbs and about 5ft  4in. I started on 15mg.

[markbenjamin57 in reply to Polywotsit]

Hello Kate / all.  Interesting what you say about starting doses on the preds. 

12 months ago, my GP gave a provisional diagnosis of PMR and started me on 30mgpd after hammering on his door about the crippling symptoms.  A subsequent Rheumatology appointment some 3 months later confirmed q. 'straight' PMR with a recommended 15mgpd, and the specialist raised his eyebrows when I told him I that I was still on (by then) 25mgpd.   

I remember feeling hugely energetic initially without understanding why, before I dipped into this forum more deeply.  Having come down off a 'high' and dealing with the reality of PMR / steroid reduction, so much makes sense now.  Yes, these, combined, have powerful effects on the mind as well as the body: and from my experience the psychological journey can be as challenging as the physiological one..