Hi everyone

[Jenlouh]

Hi everyone, my name is Jenny, I'm 42 and have PMR, arthritis, sciatica and bursitis. I was diagnosed with PMR about 6 weeks ago and my symptoms were severe, causing swelling to my hands, wrists feet and legs. I felt like I was literally turning to stone and the pain was a 10 on the scale and in most parts of my body. I could no longer climb the stairs, could barely sit on the loo, needed help with showering on a seat, as I could no longer bathe and every waking moment was excruciating even on zomorph, gabapentin and top ups of oramorph. I had and still have night and day sweats and would get the shakes where all my muscles went into spasm. My appetite had vanished. I have had to sleep upright on the reclining sofa for 3 months because I cannot get comfortable lay down. I was started on 40mg prednisalone which helped the stiffness and pain in my upper body no end. I am now on 20mg and have been for 2 weeks. I have been told to stay on this for another 2 weeks until I see the rheumatologist and then see about reducing further as I am getting some pain in my upper body and well as lower but the stiffness is a lot better and my inflammation is still present although much better than it was. I am now more flexible but my walking is not good and I need two crutches to walk a short distance. I haven't been out much in 3 months as I can't drive at the moment because of the pain and being on morphine. I do have wonderful supportive friends and family and a fantastic 16 year old son who has been my absolute rock. I have also got round to evaluating my life as I was always to busy with work as a support worker. I appreciate so many little things now. I do find I'm exhausted every day doing the slightest thing and I have the sweats and headaches a lot, however I'm just thankful that I don't have a terminal illness and there are still things to enjoy in life. I love nature, meditation, good company, interior design and gardens among lots of other things. I'm hoping one day to travel as I have never been abroad although it has always been my dream. I'm also a single mum of 3 older daughters as well as my son. (My partner of 17 years decided he didn't want to become a carer and left me about 7 weeks ago). Sorry I know I have rambled on a bit. 😀😀

[DorsetLady PMRGCAuk volunteer]

Hi Jenny, and welcome.

My, you have been through the mill, haven't you? Don't worry about rambling, it's what we specialise in on here, as well as ranting 😊.

40mg is quite high as a starting dose for PMR, was there any though of GCA in the doctor's mind. Now you are down to 20mg after only 6 weeks, I would hope the Rheumy leaves you at that dose for a bit longer to see if you can Improve a bit more before you reduce again.

The sweats and fatigue are partly due to PMR, partly Pred. Although PMR and GCA are not terminal illnesses, they certainly are serious, and need to be treated as such. You do need to try and rest as much as you can, but things certainly will get better in time. You also need to reconcile yourself to the fact that this is going to take time, it's not a matter of take the tablets and everything's okay type illness. You need to monitor the headaches, and if they get any worse, or you get other symptoms like difficulty in eating, swallowing, or any visual disturbances then you need to get medical advice.

Glad you've got good friends around you, and obviously a very caring son to help you through.

PMR certainly is life changing, you have to take life in the slow, or slower, lane for a while, but that doesn't mean you can't still enjoy it! As for travel - you will do that as well, but it takes a bit more thought sometimes. I travelled to NZ alone aged 67 (with an arthritic knee and sight in only one eye) and if I can, anyone can!

Take care, and let us know how things go.

[Jenlouh in reply to DorsetLady]

😀 Thankyou so much for your reply and inspiration and advice. Having to be patient with the PMR has been a tough lesson as I hoped to be better not long after I took the medication, but it clearly seems to be an unpredictably long road. I've had to accept the fact I can't do my job and the things I once did at the moment, but will do again one day. My body will do its own thing I guess and get better in its own time. I will tell the rheumatologist about the headaches as they're really bad some days and bad pain in the one side of my neck is always present with it. Well done on travelling especially by yourself with your conditions. Wishing you all the best. Jenny

[miss-philosopher in reply to Jenlouh]

Hi Jenny

I´m sorry you´re having such a hard time at the moment. But remember what Dorset Lady says - it will get better. It seems really hard and unfair to get PMR and more at only 42, but you know I think that everything happens for a reason. We get to stop and think deeper about things in life. Like what is really important, who are your real friends, what matters to me, what can I do to make things better and more .....I read about positive psychology and spirituel healing, and about autoimmune diets - you know how to avoid sugar, gluten, wheat and so on.....some say it betters the situation. I send you a virtuel hug, and hope you feel better soon.

I also wish you the best

[Jenlouh in reply to miss-philosopher]

Hi, Thankyou for your reply😀. Yes I agree everything happens for a reason. It has been a spiritual journey as well as a physical one. It has given me time to evaluate life and I've learnt who my real friends are. I certainly need to look at diet. That will be my next task.

Have a lovely day 🌞

[Rose54]

Hi

And welcome to the site

I was diagnosed with PMR in Aug 2015 like you I was unable to do much for myself

I too am a Support Worker I had 4 months off work and thought I would never return however I am now back at work full time. And I too only have my son to rely on although he is a lot older than yours.

Be patient, love yourself it does get better ,rest and pamper yourself .

You will pick yourself up again and enjoy life it takes time.

A good sense of humour helps and plenty of laughs, and this site is the best help ever.

Best Wishes

Rose

[Jenlouh in reply to Rose54]

Hi Rose,

Thanks for your reply 😀. Good to hear you have been able to get back to work. We have a lot in common. It's good to have the reassurance that life will get better again as it does seem never ending at times.

I enjoy a good laugh also and think it is essential in situations like this. My son and I have been watching Peter Kay and had some wonderful quality time together.

I'm really glad I found this site. Have a lovely day 🌞

[CarrieP]

Hi Jenny, I was diagnosed with pmr in March and have much the same symptoms as you including the not being able to walk anywhere without support but not the headaches. I havent seen a rheumy, just my GP, who has diagnosed me from blood tests and the fact that they have improved so much with the pred. My GP is sending me for an MRI scan on my back and right leg as thinks I may have hurt a disc in my back which is causing the walking problem, in addition to the pmr so may be worth checking that out. I am on 15mg pred so your Dr has started you on a a high dose and I am wondering, with the headaches, if they think you have GCA as well, which you also need checking as it can impact on your sight quite quickly. I can get to bed but not out of bed easily so the occupational therapist is going to get something fitted for me that I can hold on to. I am also having a job to get into the shower (which is over the bath) and need help to shower. Like you I thought I would take the pred and feel better soon as you do with say flu, but it doesnt work like that and we could need the steroids for 2-3 years which has come as a great shock. One of my feet and ankle is swollen and I am getting lots of bruises which the Dr tells me are side effects of the pred. I wish you luck as we travel this journey together and hope they can do some research into it that would help us all.

[Jenlouh in reply to CarrieP]

Hi CarrieP, I'm so sorry to hear your experiencing this too. It's good to know we're not the only ones. The O.T fitted a dream master on my bed which raises the mattress at the head like an adjustamatic bed. Then rails at the side. I just can't get comfy on it unfortunately. My skin seems to be really sensitive to touch as well and my mattress is firm. The swelling in your foot must be really uncomfortable. I'm thankful mine has gone down from taking the Pred. I wish u all the best with the MRI. I had that done also, not the most enjoyable experience but worth it to find out what's wrong.

Anyway I hope you have a good day today. Chat again soon 🌞

[PMRpro Ambassador in reply to Jenlouh]

Welcome from me too - but just to comment on this particular post: lots of people found it difficult to get comfortable like you and tried a "duvet sandwich"! Not just a cover over you but also a thick one on top of the mattress to lie on. It is softer than a mattress topper and may help.

[Kay60]

Hi jenny

So sorry to hear of your rough time. But you will get lots of advice here

I was so confused and upset at first but i read the posts everyday and have learnt so much on how to cope, one thing I read was Be Good To Yourself . And that has helped me a lot as I was beating myself up for been lazy when i was just tired.

I am sure PMRpro will post soon but she recommended Bowen Therapy for my bursitis and it helped a lot

Take very good care of yourself

Kay

[Jenlouh in reply to Kay60]

Hi Kay 😀,

Thanks for your reply. This site seems brilliant and full of pearls of wisdom to help you through PMR. I will look up Bowen therapy as I've never heard of it. I'm glad you are being kind to yourself.

I look forward to chatting again. Have a fantastic day 🌞

[PMRpro Ambassador]

Do I gather you haven't yet seen a rheumatologist? They may want to look for a wide range of other things - PMR is the outward sign of an underlying cause which can range from the autoimmune cause of the PMR we talk about to here over a whole list of things. You are very young and there are many rheumies who will not admit that PMR can happen in patients under 50 - as patients we are quite sure it can and I do know several PMR/GCA specialist rheumies who agree with us. But I also know a few who insist it can't. My view is that it is because they aren't looking for it they don't see it and then offer a range of diagnoses from stress and depression to fibromyalgia and chronic fatigue syndrome. Most of those don't respond to pred though.

Don't ignore the headaches - if they get worse or you have any visual symptoms, however fleeting, do get to your doctor quickly, the emergency department if all else fails.

Where are you based - order of magnitude, not your address!

[Jenlouh in reply to PMRpro]

No I haven't seen a rheumatologist yet. I'm due to go on the 7th June. I read it is extremely rare in people under the age of 50 as well, so I was unsure if my G.P has diagnosed me correctly, but he seems convinced he is right and inflammation is falling since being on the prednisalone. I am in Malvern, Worcestershire.

[Polywotsit PMRGCAuk team member in reply to Jenlouh]

Hi Jenny - am wondering whether you did in fact have a misdiagnosis? It would be good to hear from you if you have. Best wishes, Kate

[Jenlouh]

Thankyou 😀😀

[miss-philosopher]

yes, you´re right Kai I know some of it. But I will still study it carefully. You sound very enthusiastic it is inspirering. thank you .

[Jenlouh]

Many thanks for the link Kai and your wonderful message. Much appreciated. I really like what you have posted and all the fab emoticons 😀. I absolutely believe that everything happens for a reason and although tough to lose a relationship after so long, I had felt stuck and taken for granted for a long time, so actually think this was a blessing in disguise. We still speak on the phone every few days and will remain friends. I will think positively that good things are going to happen 🌞🙂

My feet have started to swell tonight, which is the first time since taking the Pred and pain has been worse today. The Pred had got rid of the swelling in my feet and hands, so hope my inflammation isn't increasing. Do you know if this is normal? I have read it could be a side effect from the prednisalone?

I hope you've had a good day. Best wishes, Jenny