The last few years have been a bit of a mare. Diagnosed with Celiac (2021) followed by GCA (2022) and now Polymyalgia. I've managed to cope through all of this and work but I've hit a brick wall now. I'm on Steroids (12.5mg) and looking to move to Methatrexate.
The thing I'm struggling with the most is fatigue. I sleep more than I'm awake! I've tried to go back to work but I have to go back to bed for a couple of hours after my shift because it wipes me out. On my day's off I'm usually in bed all day. If I do manage a couple of everyday tasks it completely wipes me out again the next day.
Does anyone else suffer from this and just feel that they're not capable of working due to this disease? I'm 63 next month and can't see a way of working another 4 years.
Are any of you in a similar position? I can't afford to leave work but I don't think my health will thank me for trying and it really isn't much quality of life?
I'm not sure if Polymyalgia is classed as being eligible for sick pay or any other type of benefit?
Thank you for reading and any thoughts would be appreciated.
Helen
Written by
TeddyCR
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Unfortunately fatigue is a major part in ant autoimmune/chronic illness. Working with your issues I'm not surprised you are wiped out.
Firstly has your employer taken all the necessary actions to improve your working conditions in accordance with the Equality Act. Guess you've discussed things with line management, HR/Occy Health and union rep.
This subject arises very often, maybe have a look at this members profile -some of their earlier posts on same subject -
You will also get related posts on screen which may help. Might have got more if you'd included the wording "working with GCA and PMR" or similar in title.
If you are signed off because you aren't fit to work then you are entitled to statutory sick pay and whatever your employer offers as sick pay. Doesn't matter what the label is. Perhaps a few weeks off would recharge your batteries? What is your employer's policy on sick leave?
PMR and GCA do come under disability legislation - and that means your employer should make necessary and reasonable accommodations to facilitate you being able to continue working - shorter hours, working from home if applicable, different duties possibly, improved working station, whatever applies for your job. Obviously there are some it just doesn't work out for. It is a shame you didn't go down this path when it all first started. Occy Health is the place to go as well as a union if you have one - not HR, they are on the employer's side and looking after their interests, not yours. Retiral on health grounds may be an option. Others will probably advise better there - I was freelance, you'll never have a better boss! Trouble is, no work, no pay, and no sick pay at all!
I'm not sure what moving to methotrexate is meant to achieve. For a small cohort of patients it works very well - and, to be fair, you have to try it to find out if you are one of that elite group. However - MTX made me so fatigued it wasn't true and I had to abandon it after 4 weeks to go to an international meeting and never went back on it as by the time that was over I felt human again. It might make things even worse. You haven't got to 3 years yet - seems reasonable to me, 4 to 5 years for GCA is very common and even longer for PMR, though your PMR will be part of your GCA, it can be a symptom.
Thank you. Rheumatoolgy suggested Methotrexate because I was on a high dose of steroids for a year for the GCA. Been off them 1 year and back on Prendisolone a year later. They're concerned about me being on Steroids for a long time because of how it affects your bones. I am worried about Methotrexate but also the steroids.
There are a lot worse outcomes than possible loss of bone density if you DON'T take pred. Ask DorsetLady or Grammy80 . There are ways of minimising the bone density problem - there are medications to protect bones. I have been on pred for 15 years, albeit at lower starting doses than are required for GCA but in 15 years I've had a lot more than you are likely to clock up. I've just started a course of bisphosphonate infusions - haven't needed it before.
Some doctors over-egg the problems without stopping to consider the ultimate adverse effect of inadequate pred which is vision loss.
Bet your cumulative dose of steroids is a lot lower than many on here - including PMRpro and myself… as PMRpro has said she has only just got to the stage where she requires a bisphosphonate. I took one for 4 years [being in the susceptible group due to family and personal history] alongside VitD /Calcium supplement and last DEXA scan was fine… no sign of osteoporosis.
I had already lost sight in one eye due to late diagnosis of GCA, and Pred certainly saved my remaining one… so I never had a fear of the medication, it was a saviour for me.
Gosh - you have been through so much - it makes me feel really bad for feeling sorry for myself. When they cured by GCA with steroids I was just so relieved and I hadn't had a stroke or lost my vision. I think my steroids are quite low but you have to go off your doc and rheumy. When I spoke to the hospital pharmacist she actually said that my inflammation markers were really high at 100 (they were 178 when first diagnosed with GCA). The medical care I've received has been really good but they don't sympathise - it's just - yes you've got this - take that and go away. Not always that simple x
About 6 week's ago - took 6 weeks to diagnose and go back on steroids. Was prescribed 15mg then reduced to 12.5mg. My mobility is a lot better, the back of my neck hurts all the time but I just slather deep heat on it. I can cope with most things but it's the awful fatigue that is causing me the most distress. I'm asleep in bed more than I'm awake ! lol
As DL says - for each of us even what is maybe a minor problem to someone else can feel like the end of the world when it comes on top of a drip feed of other minor and not so minor hiccups. That's why there are no silly questions - if you felt a need to ask something, it was because at that time it was overwhelming you.
And yes - the fatigue can be awful because it saps you to the core and you can't do anything to buck yourself up and haven't the energy to even enjoy company.
Please don’t ever think your problems are inferior - they aren’t -and they have great significance to you and your QOL.
My late hubby who had coronary issues for the last 17 years of his life despite (or maybe because of) being a roughy toughy soldier and outdoor man for the previous 50 odd years once said after I’d said something like ‘there are people worse off than us -
“other people may be suffering more pain than me, or less pain than me and I’m sorry about that, but my pain is my pain -and that’s all I can do something about”
That may sound selfish, but it’s true - we all have our own issues -and no one’s is more important than yours when you are going through them.. 🌸
I mention my story to
a. Remind others what can happen if you aren’t treated properly,
b. To also prove you can get through the toughest of times, even when you think that’s impossible, and
c. Also to say, although Pred is not the most pleasant of drugs, it is not the devil that many doctors imply.
It’s certainly not to belittle others problems. I greatly admire anyone who has to work through their illness.
That's what I'm petrified about - losing my vision!! I've Osteopenia (which isn't too much of a problem). It took 3.5 months to diagnose the GCA and, after 2 weeks of steroids, I was fine. Although bouncing off the ceiling (I was on a higher dose at least 40mg). When I came off steroids I was very tired and then had severe depression & anxiety for months (which I think was a result of coming off steroids. Then really bad back pain (like sciatica) followed by the Polymyalgia diagnosis. You are so kind for replying and I really appreciate your advice - thank you !
Hi. I take great exception to your comment that HR are on the employers side. I was employed in HR for many years as a manager / director and made very sure that my department walked the very fine line between supporting staff and management ensuring the mgt followed employment legislation and staff were treated fairly. I also managed Occ Health.
Take exception if you like - but they are there to look after the employer's side and sometimes seem to dig out all the obstacles they can to prevent retirement on medical grounds because it will cost the pension fund more. If they aren't - it is often what it looks like.
Having been a union rep for a workplace covering 36k staff I completely agree that management were definitely not on the employees side. HR/ER would assist with advice during hearings but I can honestly say that I only ever did three hearings where the ER managers saw common sense and advised accordingly. The rest were always on the employers side.
Alas I am now retired and suffering from GCA so I do sympathise with you all. It is a hellish condition that few dan appreciate unless then are suffering. It took a long fight with my GP for him to appreciate what was going on
Having all of these illnesses , and being on medications like Steroids , PPIs ( Omeprazole) , antacids , MTX , and various other pain killers , antidepressants and some cardiac medications can cause Chronic Fatigue.The stress your body is under trying to heal and cope with processing medications and take part in everyday life takes it toll.
But one thing you can do , and I'd suggest that you do this before beginning MTX ( in fact NICE recommends this while on medications like steroids and you can request the tests on the NHS from your GP ) is to get some basic blood tests for things that commonly become Deficienct and cause severe fatigue.
These tests include: full blood count, Ferritin/ Iron, Vitamin B12 , Folate , kidney function ( electrolytes) , liver function, and Vitamin D
It's very important if you also have a digestive condition like Coeliac to get these done because you are more at risk of a nutrient Deficiency with these conditions.
Some illnesses that affect digestion , and many medications affect how well you absorb nutrients from food no matter how good your diet is , particularly Vitamin B 12 and Folate. This is because they affect the acid levels in your stomach which helps you to absorb these.
Insufficient B12 or Folate can make it harder for you to absorb other nutrients as well , especially Iron, Calcium and Vitamin D.
They also affect your pain and muscle strength causing exercise intolerance.
They affect your sleep, causing you to sleep more or become insomniac.
They affect your thinking skills and mental alertness.
They also reduce how well you absorb the active ingredients in your medications or supplements which means you may be getting a lower dose than you think.
Your ability to absorb Vitamin B12 and Folate also decreases over the age of 60 because your stomach function changes.
Which is why it's medically recommended to have these blood tests on certain medications like Steroids or if you have digestive health problems every 6-12 months , except for Vitamin D which can only be tested free every 12 months in the UK.
Request these tests to rule out these issues as being a contributing factor to how run down you are feeling before starting supplements.
If you already take supplements stop them for 4 days to a week before the tests to get accurate results.
Request a copy of the results , even if your GP says they are normal.
This is because often a GP will say your test is normal when you are not medically Deficienct, but you could be Insufficient ( your results were borderline or close to the abnormal range ).
If you are insufficient you will still get symptoms and need to take preventative steps with a change in diet and a short term supplement before it gets worse , and to improve how you feel.
If you have B12 Deficiency and have already taken B12 supplements for some time you need to let your doctor know and understand that supplements were not working and ask if you should get B12 injections instead.
You also need to ask them to test you for PA antibodies to rule out Pernicious Anaemia.
You may need a short course of injections or loading doses then an injection every three months to prevent it happening again.
If you have a Folate Deficiency you may need Folic acid but if you already had it in a supplement you may need to have a larger dose or take a different OTC supplements of Methylfolate in an active form.
If you have digestive disorders or take certain medications it can be advisable to take certain supplements in a active spray or sublingual form to maintain your nutrient levels and improve how you feel during recovery. This can often help reduce the side effects you have , improve your pain management and fatigue, and help you to taper down medications with less discomfort.
If you find you cannot cope with working the hours you do now but feel you could work with more flexible hours or at work help speak to your HR department or contact Work and Pensions/ Occupational Health to get someone to come in and give you a work assessment.
You can tell them what you could cope with and they can assess your work environment to spot ways to make it easy for you.
They can then give a report to you and your employer, suggesting less hours , part time , flexible hours , a change in role to one that is less physically demanding or involves too much travel, better furniture and gadgets , more and longer sanctioned rest periods, a work buddy to keep an eye on you or even if it's possible in your job remote working from Home.
They will contact your workplace and you to get updates and find out if you need any more help or if you might need to come away from work for some time for reasons of sickness.
Having the occupational assessment helps you in the end if you must leave work for sometime because you can already show you tried to work but could not continue with evidence from an official organisation. They can also help you to sort out which benefits you can receive which are often higher than the basic level ones you might think is your only entitlement.
In the UK you can't get PPI with those illnesses alone , but they can mean you get more enhanced sickness related unemployment benefits and that you are given a stay of time of up to a year on the enhanced rate when you will not be made to look for or return to work.
Oh my, with your permission can I print out the above to show to my GP?
I have been trying to get my surgery never see the same GP twice, to take me seriously and not keep brushing me off and you have just described me t.
First started with right sided across the scalp and down the shoulder and arm pain on the side diagnosed firstly as all in your head and after paying for several and going through ENT where they took most of my teeth out to no effect cataract operations and finally a very slow GCI diagnosis last week.
At the same time my B12 limits were in my boots and I was finally given loading doses followed by four further injections over a year and then stopped abruptly.
Also during that time I was diagnosed with after a year of horrible bowel incontinence again private consultant and possible coeliac disease but never followed.
At the time of hospitalisation with CDiff was taken off ppi diagnosed with very low magnesium which the GPs were told to follow up and never did that was over a year ago and discharged no follow-up at GP surgery.
At the beginning of this year I again tried to request GP to follow up a diagnosis of possible PMR and was told don’t need a horrible disease end of subject.
The fatigue has been terrible. I have no further treatment for B12 and the latest test shows my level at 181 whereas that makes me one point below borderline so no treatment.
I have reached the end of my tether and decided to stop all medications including Metformin which I felt sure was making me feel really drowsy and it would appear that was the case because I was better within a few days.
I was onof the morphine patches buy go stop which had a wonderful effect of immediately stopping the bowel incontinence within a day. However, I now had nothing for pain as the for years Co-Codamolwas doing nothing and the pain in my side of my head my side and throughout my body was getting excruciating and I just did not want to be here anymore.
Two weeks ago on a Saturday I visited Specsavers who had done my cataract operation and provide my new spectacles for reading as I could not see more tests and decided I had double vision and they asked me what else was wrong and I told them about the Pains then. got a second optician in and I heard them say query GCA he then asked me how I have been tested for it and I said no he said if you symptoms to the doctor I said yes he said down on a piece of paper GCA was a Saturday and said see your GP on Monday and ask if you’ve ever had a blood test for this end of subject on the Monday could not get through to surgery so sent in an online consult to which I received a reply a GP will phone you tomorrow day I no phone calls but an email at the end of the day to say that I was not answering my phone at the same time my sister had rang me to say she was getting strange calls from GP surgery leading to which she had gone down to the surgery and asked what it was all about and they have told her it was a scam as we would not leave messages like that it was a PA not aGP it it’s not important.
Next morning I have an appointment GP which I’ve had for four weeks anyway coincidentally and at reception they told me they had transposed our phone numbers oh that right now end of subject GP finally took notice and sent me to the hospital for an urgent blood test and contacted the ID department and I would get an appointment.
I had the test that same day and received an appointment for the following Monday this week.
He was completely confusedabout but basically said yes you have GCA although
Inflammation markers are not really raised and started on 60 mg for a week until this next Monday when I see them again.
My fatigue has gone beyond belief I am so tired can’t sleep. I can’t put one foot in front other. head is just total brain fog but at least I feel something is being done I may not lose my sight and also it the pain throughout the rest of my body quite a bit better so thank you for the above. You have helped me no end I’m not an imagination. It is all real. It’s them that needs to buck up not me so thank you
No, we DON't need a horrible disease (although there are far worse) - but that is their job, to identify horrible diseases and treat them!!!! What a SILLY thing to say.
Yes , you can , but from the sound of your last reply they may not take much notice of it. If I could I'd come and act like your witness or patient advocate but I'm not there. When you have an appointment for this it might be a good idea to take in a calm family member or friend to be your witness and ask questions if they need to , if you get nervous or forget something.Write down all of your requests on a pad , tick each one off as it's answered , if they try to rush you out , use the Friendly Columbo strategy ( you know the old TV Detective) and say , " Oh sorry , just one more thing". Say that as many times as you need to until you have had all your queries answered.
They should not refuse you these tests , especially with you health issues. You can remind them of the NICE rules if they do and request a written medical explanation for them not testing you. Often this is enough to change their mind!
From the looks of things they have done the usual GP surgery error in relation to your B12 Deficiency.
You got the loading doses , you got a year of three monthly injections and then maybe they just stopped it thinking you must be well now or did what they shouldn't while you take injections, tested your B12 , got a high result and then thought it was solved and the treatment could be stopped, Of course, as soon as the injections stop if it wasn't your diet that was the issue your B12 will slip right down again , you get the symptoms back , you become insufficient then Deficienct again.
If you have B12 or Folate Deficiency related to your Coeliac , medically induced or because you could have Pernicious Anaemia or a functional issue you they are not meant to test your B12 , they are meant to continue the injections for life to prevent the same problems occurring. But they have a habit of trying to stop them often because of one poor piece of research which implied high B12 could cause a health issue which no other country in the world rates, mainly because of cost.
You would probably need loading doses again now , or at the very least your recent borderline B12 result is your own evidence to show them that your injections should be resumed before you become Deficienct again.
Had you been taking a B vitamins supplement and eating B12 rich foods after your injections stopped?
If so , this is more evidence that you are not absorbing B12 via the stomach well enough and need the injections.
You usually benefit from a Folate supplement too because this is often Deficienct for the same reasons as B12 but it's affect can be masked while you are in B12 injections or supplements. You take a Folate supplement with a non acidic Vitamin C option and iron if you need it after food for better absorption.
Vitamin B12 is better taken without any vitamin C so separately.
The thing is that if you've already got a recurring B12 Deficiency problem , taking a high dose of steroids will make it worse if you are not being treated properly. It will also cause Anaemia and can trigger Vitamin D deficiency too.
You shouldn't just dump your medications , you've been diagnosed with GCA and Coeliac and you need to keep your various illnesses properly medicated at the same time as you have your steroid therapy if you want to improve your recovery and daily health.
It's not necessarily the medications you are on that are the problem even if they may make absorbing your nutrients more difficult, it is that you aren't getting properly treated or getting the right diet advice to treat the recurring deficiency.
If you haven't had any proper help or advice since being diagnosed Coeliac you need a medication review and you should politely but firmly request your GP to refer you to the NHS Dietitian for help organising your diet and treatment options,
They are actually amazing and can write to your GP to do tests that they often neglect like stool tests etc. and send recommendations for treatment.
If they refuse to help you and keep ignoring your health needs they are being "professionally negligent" if they don't follow NICE and NHS recommendations in organising your treatment plan and doing the appropriate monitoring tests that you are entitled to receive they are not " safeguarding the patients needs" and are "not giving you the adequate level of care expected from a Primary Care Provider". The words I have put in speech marks are the official terms for this which are classed as " red flags" in a patient complaint and have the issue taken more seriously.
You can tell them that your treatment has not been acceptable for these reasons and say that if this does not change you have no other choice but to report your treatment in a complaint to the local Integrated Care Board, You always complain to the ICB in house practice complaints to the Practice Manager seldom get you the change you need.
But you have a lot of Health issues bashing heads at the moment. You need joined up care and you need a GP Practice that gets recommendations from your Consultants and follows them , not just ignores them or pick and choose what they want to do. So even if you firmly request the things to change at the moment or put in a complaint or could actually be safer and less stressful for you to also look for a new GP surgery in your area with better reviews from patients with similar illnesses to you.
You could get local recommendations from a local Coeliac , Pernicious Anaemia and local PMR. GCA or Arthritis group.
If you need more help please feel free to send me a private message , I'm happy to help if I can , take care , Bee
Hi TeddyCR, sorry you are going through this. I had PMR for 7 years when I got diagnosed with GCA which lasted another 5 years. I worked full time all those years and can attest to the fatigue! Though some years were better than others. Putting a little background in your bio may help us understand the situation more. If your Sed rate was 100 and you’re having neck pain after only 6 weeks back on Pred, the reduction may be too fast for you, or the 15mg wasn’t enough to clear out all the inflammation. It seems early days to add Methotrexate into the mix, especially since that med has so many potential side effects too.
Others have given good advice. Hope you’re able navigate it all successfully!
Just be aware that you don't need to be anaemic to have Pernicious Anaemia, nor other forms of B12 deficiency. Gluten is cross reactive (molecular mimicry) with the parietal cells which produce intrinsic factor, so it is quite likely that you will be struggling to absorb B12 as well as iron and digestion of food (reduced acidity). You could ask for serum B12, serum folate, gastric parietal cell antibodies and intrinsic factor antibodies to be tested, but normal of any or all does not preclude a deficiency. Cheers
Anaemia is very common in PMR and other autoimmune conditions - it is called the anaemia of chronic illness. It isn't cured with supplements but by optimal management of the autoimmune condition.
I had terrible fatigue early on. Like you I had to keep working (I was younger than most when diagnosed and still had kids at home too) but thankfully I work part time amd had flexible hours so I was able to work around the fatigue. I don’t think I could have managed a full time job. We also moved to at home work the year before covid and that helped a lot too. I also had to adjust my activity including get help from others around the house. The good news is that the severe fatigue did eventually ease up. I still need more sleep than most but it’s all manageable now.
I would caution against lowering your dose since your neck pain is still an issue. I would suggest you may need to go back to 15 for a while to get that under control before decreasing. If you go too fast you will likely end up with flares and need more prednisone for longer than if you go slow. I would presonally skip the methotrexate as a steroid sparer until you have had a good go at getting your steroids down without it. I think I read you were only taking prednisone for GCA for one year. That is so fast. Methotrexate just adds potential for many more side effects and you are already struggling.
Doctors seem to think it’s a relentless race to get off steroids but it’s not. It’s a slow adjustment to finding the lowest possible dose that controls your symptoms and only you can manage that. Never reduce while in pain. Stay at each dose at least a month to ensure you can handle the new dose. Reduce by smaller steps if necessary (1/2 mg once at 10mg for example).
I am in the US and we don’t get any accommodations for this kind of thing so others have given you better advise there. I hope your fatigue improves soon and you get the help you need at work.
I've struggled with immune system problems all my life. I had to give up full-time work in my early-50s, part-time work in my late-50s, and almost all physical activity at 60. Modern treatments keep the symptoms under control, but do nothing to help the fatigue. They may even add to it.
Exhaustive fatigue. Just sayinf. Fatigue doesnt do it justice. Ive been on 23 mile force march when in the service with pack and weapon and would sleep less afterwards than i do now from the PMR. Albeit the marching was 50 years ago. Still i say the PMR fatigue is comparably more exhausting.
That's because it's Fatigue , and a medically induced type rather than Tiredness and Soreness. We can have both.They are very different beasts.
Even the chronic Fatigue we can get with our illnesses is only about 50% of the severity that someone with M.E/CFS and they can't even use keeping active for a few minutes an hour throughout the day to improve it as we can . Often with Chronic Fatigue Syndrome the exercise that can help other types of Chronic Fatigue makes it much worse.
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Pain while tapering 
Good days bad days
Fatigue.
Re hospital bed
Free of polymyalgia
