The mask is slipping and I am not doing very well - PMRGCAuk


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The mask is slipping and I am not doing very well


I thought that I was coping quite well with my PMR/GCA but after a year of this each flare up seems to get worse. I am currently finding the pain in my legs hips neck knees etc sheer hell and the sweating is horrendous.

Now I have been told that my blood sugars are high and that I may be heading for diabetes and just had a phone call asking me to make an appointment to see my Doctor regarding the results of my bone scan (the nurse hinted that something was wrong when she looked at the images but said she could not tell me anything)

I have remained cheerful and tried to hide things from my friends and family but this morning I was sitting in a traffic jam and felt overwhelmed by it all and could,nt stop the tears flowing.

i am not doing so well at the moment and even feel the odd one out sometimes as a lone male with this illness.

I know that I will have to discuss these issues with a Doctor but I am so sick (sorry about the pun) of going to the Doctors and the hospital.

Sorry just wanted a whinge and connect to those who understand what I am going through.

17 Replies

I'm not a bloke (last time I looked at least) but I think it must in many ways be worse for you than it is for us when it doesn't pan out. Men really don't do any illness well - and chronic illness often even worse. Women will talk the hind leg off a donkey about their problems - you men take the stiff upper lip attitude and I'm not sure it helps.

However - you aren't a lone male really. Have you ever been over to the northeast support group forum? We have several men associated with that group though they don't visit very often - most of them have got their pred dose down quite well but have had PMR for a longish time. But I'm sure we could put you in contact with them.

I know too that sambucca on here knows several men with PMR or GCA and has put men in touch with them for man-to-man chats. I'll give her a shout.

Mike, you are suffering with HIUPTH (had it up to here) and you need to see your doctor like now - if you don't tell them they won't know how you are feeling - go in with a smiling face and they will think that everything is fine and dandy when it is far from that. We usually suggest the ladies burst into tears (not hard for most of us to do under these circumstances) and I can't see any problem with telling a bloke to do the same. THEY need to know!

The same applies to friends and family - if you don't tell them the truth how can they know how things are? I know it's not the easiest thing in the world to convey and I had a very hard time when I realised that I was making things worse for myself by keeping them in the dark and struggling on alone. It's still not easy to ask for help, but I am making a breakthrough here and there.

There are some more gents with PMR around, you could try the other forum?

Thanks polkadotcom you have diagnosed my problem of HIUTH with such accuracy and it even raised a smile. Your advice is very sound.

Thanks PMRPro as you say it's not easy to openly talk about your feelings if you are a bloke but you ladies have been a wonderful support on this site

Hello Classicmike. What an awful time you are having. Not sure how much help it is to know that many of us have been, and many still are, at exactly the point you are at. Of course stressing doesn't help - but then it's easier to say than to stop. Sometimes there seems to be no light at the end of the tunnel. I do hope some of our guys on the forum will also write to you - you need some bolstering up.

And you will have better days and find the end of the tunnel - but it may take time and much patience. You have to personally dig very deep with these conditions!

I do hope you have a practical and sympathetic doctor - there may be things that they can do to ease what you are going through; so do talk to them and tell them how you are feeling. I did, and went onto some drugs for only a very short time, but they helped enormously until I was able to cope on my own again. And I know exactly what you mean about being sick of the sight of the doctor's surgery.....if it's not about one thing it's about another. I guess we just have to acknowledge it and carry on - and remember that we didn't ask to have the condition! And do talk with your family - they are probably worried about you and you may find that they would like to help too.

I can't really comment on your symptoms and the possible diabetes, apart from the say that if you are on Pred it does have side-effects - and many of us are dealing with those as well as the horrid, debilitating, depressing lot that is PMR and or GCA.

I do hope that tomorrow is a better day for you.

From one who is hugely grateful to have finally found light at the end of the tunnel!

Green girl thank you so much for sharing your own experience, just knowing that someone else has taken the same journey as me and got over and beyond the point that I am at is a great comfort

Hello ClassicMike, I agree with PMRPRO that it can be more difficult for men, as they are brought up to have a stiff upper lip. I know exactly how you feel, I have PMR and Undiagnosed GCA type symptoms and after 15 months with these GCA type symptoms, it gets on top of me. I like you tend to conceal it from friends and family, but when I retire to bed at night the tears flow. For me it releases some tension and I can shrug it off and carry on again. It sounds like you need to open up and show your GP how you really feel, and I understand the questions re diabetes and osteoporosis is adding to your worry at present. You are in my thoughts, gentle hugs x

Hi runrig01 Looks like I need to be more honest with my GP and your honesty about what you are experiencing after 15 months has been a great comfort, ditto on the hugs x

CelticPMRGCAuk volunteer

Hi Mike, great that you've taken the first step and come on here and told us how you feel. I'm sure the majority of us have felt exactly the same as you from time to time especially in the first year or so of this frustrating illness when our emotions can literally be all over the place. Our patience can be tested to the very limits with setback after setback so it isn't at all surprising when we sometimes feel totally out of control. It is enough to floor the most patient of people. Now, as polkadot has said, you must take the second step and see your GP asap and get some help to tide you over until you feel strong again. And you will feel strong again, and be able to look ahead to the light at the end of the tunnel where those of us who have reached it will be waiting for you. Meanwhile, we're all still here whenever you feel like offloading or simply a chat.

Classicmike in reply to Celtic

Once again this site has given me a boost when I needed it I am seeing my Doctor next Monday for bone scan results and will relay my concerns thank you so much for your help x


send me an email to Include your email address and/or telephone number.

Put in the subject Healthunlocked- Classicmike. I will then contact you. I am trying to find out how to send you a PM on this site, if I manage it, use the information contained.

You are not alone I can promise you that.

Classicmike in reply to jinasc

Will email you Sambucca thanks for your help

I want to endorse all that has been said. I have had some very bleak moments on this journey and feel so much worse emotionally when I am in a flare. I think that is probably a combination of all the pain, the sleeplessness, too much cortisol and too much inflammation in the system. We need to remember sometimes that what is happening physically will of course affect our emotional state as they are both intertwined. That does not make us weak or useless, it makes us human. There have been studies done on the content of our tears and it changes depending on why we are crying- tears are medicinal and get rid of toxins in our system! Therefore, cry as much as you need- it is doing you good!

I am a counsellor and would heartily recommend talking to a counsellor as a way of getting things off your chest in a safe, neutral and confidential space. Sometimes it is easier to talk to a stranger than to family and friends as we don't want to bother or worry our nearest and dearest.

Anyway, as Celtic says the first step is to acknowledge how you are feeling- that in itself can bring a lot of relief! There are many of us here to share with each other, thank goodness. X

Classicmike in reply to suzy1959

Thank you Suzy 1959 Your suggestion about seeing a counsellor is just what I need I will ask the Doctor for a referral and thanks for your support it's much appreciated

Hold on tight classismike help and comfort will get you through these bad times. Take care.

Hi Mike ,another Mike here ,yes im a man and have been thru what you are going thru now ,Ive gca pmr now sticky blood to add to my lengthening list ,click on my name to see my ever lengthening list to much to write on here .Ive been medically retired from job with all this at 51.I had a physical job could not do it .Been a year now ,still on 25mg pred daily ,weekly methotrexate jab also. Going on holiday soon got to start 2nd lot of chemo ,cyclo. six more infusion to add to 6 ive had ,got to start warfarin just to add to the cocktail. Stay positive and only way at least we are still here mate .Its a mad group of illness vasculitis and autoimmune connected condions .The lasses on here are really up with illness and are very helpful,the forum pmrgcene east is full of folk who can advise us and support .Hope I've been some comfort Mike .

Classicmike in reply to mickt

Hi Mickt, Well another bloke with this PMR/GCA and a lot more besides, I feel that I should be offering you support mate.

Like you, my GCA problems started in June last year followed six months later with PMR and boy is,nt it a life changer. I have had a couple of heart episodes before this lot and twice had to have a coronary stent fitted to my coronary arteries ( the last time I went to Patworth hospital my right coronary artery had a 95% blockage) but all that was a breeze compared with this lot.

I am having to carry a towel in my car with me at the moment as the slightest exertion soaks my head and shirt and the pains from the PMR are all over my body at the moment.

Just bought a 1970 Triumph herald convertable which I thought would cheer me up but my back and hips are so bad that I can,t get in and out of the bloody thing (very low seats) so it will have to go.

A phrase that I use quite often at the moment is Oh well at least I am still here and it is important as you mentioned to remember that.

Thanks for your support Mick, the girls are lovely on this site but we are very much in the minority and it's nice to connect to a block for a change.

Let's hope that things will improve a bit for us both (My goal is to take my wife away for a break but can,t contemplate that at the moment.

Thanks for getting in touch Mick.

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