Polymyalgia

[Stavrou1]

Hi Friends Just a update since being in remission in Dec 2023.I have continued to struggle with Arthritis all over and muscle pain. Over the last 3 months . GP has been montiring the levels of my RF to confirmed the Arthritis & Polymyalgia. Even my Jaw has been effected . I am still having to use a stick on & off on a daily basis . Am wondering if anyone else has suffered after the V& O treatment. ..... was prescribed Prednisolone, side effects were awful , so i took the decision to stop them. Fed up popping pills, and than giving me other problems... i was reffered for Accupunture, am just waiting to be assessed.

😊

[GMa27]

My mom had Polymyalgia. She used Prednisone for 20 years. Other than the Prednisone puffy face, it really helped her. She did go to acupuncture & that helped a little. I love acupuncture, helps me so much with everything! Definitely try it. 💕

[Stavrou1 in reply to GMa27]

GMa27 Thank you for your reply , very helpful.

Sorry to hear about your mum . 20 years bless her !!! . . ❤️

[DoriZett]

I deal with arthritis and chronic pain. I have done acupuncture on and off over the years and found it helpful. Wishing you some relief - hope you find a modality that works for you.

[SofiaDeo in reply to DoriZett]

I second this! Acupuncture helps with my fibromyalgia pain. Like other things medical, it doesn't work for everyone (no guarantees in medicine) but it's definately worth a try.

I used an accredited Doctor of Oriental Medicine, who also happened to be an instructor. Get the best person you can initially, even if you have to travel a bit/inconvenient distance. Once you know if it helps you, you can get someone closer to follow up. Similar to how we might see a CLL specialist, with a local person monitoring.

[Stavrou1 in reply to SofiaDeo]

Hi SofiaBless you , you have been through so much . Thank you for your reply and good advice , take it all on board & yes !, anything is worth ago . I have been refered to Rennie Grove ...hopefully this coming week i will get a date for my assessment appointment . 🤞

[Stavrou1 in reply to SofiaDeo]

I know you have a very good knowledge with our diese. Do you know or belive Polymyalgia or Fibromyalgia is the impact off our CLL and immune system.......

[SofiaDeo in reply to Stavrou1]

I'm not sure what you are asking; I got the fibromyalgia diagnosis decades before the CLL one. I finally figured out chemicals in foods & drugs definately aggravated my symptoms, as well as stress. So avoiding trigger foods, and doing things like meditation, working less, etc. have helped me greatly.

[Stavrou1 in reply to SofiaDeo]

Hiello Sofia thank you for your reply and sorry for the confusion . You answered my question in your response . That you condtion started decades ago . . .. am quite good with foods ...very occasionally i slip up .

[Stavrou1 in reply to DoriZett]

Thank you for your reply . Sorry you have had to deal with it a lot ..... I am hopeful it will help , but there is no guarantee, just trying to be positive ...... with all that going on with me & Tinnitus and headache, can only get better. Fingers crossed . Am trying to do 1015 minutes a day of yoga 🧘‍♀️ . 😊

[DoriZett in reply to Stavrou1]

I have tinnitus, too and just recently got hearing aids. I am only 62 but my hearing loss is congenital (hereditary) and has been worsening with time. The hearing aids do distract from the tinnitus but they are also one more health support device to maintain.

I did yoga and Pilates for years and really felt physically strong with those workouts (prior to CLL/SLL diagnosis).

While I don't have a regular yoga practice right now - I use those moves as part of my gentle exercise routine when I do. I am just starting disability (from the cumulative effect of various health conditions) and am seeking a cobbled together exercise routine/schedule that won't flare up fibromyalgia, or other injuries I've had over the years.

I plan on gentle walking, stretching, and support of acupuncture and meditation (free from my local cancer support center), and any other budget conscious activities that work for me. I'm checking out the AARP online classes, and YouTube videos on "senior" exercise, and seeing what my local senior center offers.

Being present and positive is a good plan!🌺

All the best to you.

[Stavrou1 in reply to DoriZett]

Thank you so much for sharing . I never realised how many people suffer with this disabling condtion! . I am turning 60 next month , but unfortunately I have suffered, with ears , nose and throat from a toddler . To the age of 16 with glue smelly ears . I have had grommets in 3 times over the years , last operation 5 years ago . .. useless . I now have 70 % loss on one side 30% on other .... I am sure like most people you learn to lip read . Positive news i have another appointment on Friday with the NHS hearing . Unfournately have had to cancel 3 times previously . ..... I am actually looking forward to going . Yoga is getting easier , I am conscious not to do anything that increases flare up ! . I am trying my hardest to stay positive. Take care .

😊

[DoriZett in reply to Stavrou1]

When we went to COVID masks - I realized how much I had come to depend upon lip reading. That propelled me to finally make the investment in hearing aids - realizing how much I was missing in conversations, or if people were turned away from me when talking.

The hearing aids make a huge difference to be sure but I do not like the feeling of the units in my ears - especially when hot and sweaty. With glasses stems already behind my ears, and mask loops (on when needed - due to CLL/SLL) - the behind the ear hearing aid units were not advised for me. I try to be grateful that there are devices to help us (at a cost of course $$$$$) but we will find our way!😉

[Stavrou1 in reply to DoriZett]

Hi again Thank you for your message. And sharing how they have helped.

I definitely feel this is the best thing for me .

Mostly to get some relief from Tinnitus !!! ! .

Having the unit behind the ears , and wearing glasses , i am likely to loose them . I am also still wearing mask around people . However I am grateful , as here in the UK , they are provided free by the NHS . If you loose them one or both you have to pay.... I am not sure which ones , i will be offered. .....

😊

[AnneHill in reply to DoriZett]

I used to find swimming helped and I plan to start again. The centre has a gym and various classes inc pilates and yoga. There are other classes too. Anne uk

[Stavrou1 in reply to AnneHill]

Hi Anne thank you for your reply , I would like to think in would be able tom go back to swimming . I have also been advised by my Haematologist to stay away because of germs.....😊

[AnneHill in reply to Stavrou1]

I stopped going because I had terrible fatigue but Covid has stopped me going back. I have mobility and pain issues and swimming would really help.I need ivig every 4 weeks and I need to ask my consultant. I thought that I would put a coverup on and come home to shower.

Its easier said than done, take care Anne uk

[Stavrou1 in reply to AnneHill]

Good morning Anne and thank you for your message . Sorry to hear you are having a tough time with fatigue , on top of other health issues . I have had chronic fatigue /M.E about 35 years , life changing and disabling !! . I found swimming use to help .....up untill covid .....than got sick . I never thought about showering at home , Good idea . Wishing you well . Take care ..

[Lenny123]

Have had freinds with Polymyalgia Rheumatica. Steroids are problematic. Do know of one great remission with Methotrexate( a chemoterapy agent). May be worth bringing up with docs.

Good luck.

[Stavrou1]

Hello Len Thank you so much . I will take it up with my GP on Friday . Fingers 🤞.

[keeptalking]

Hi Stavropol. Sorry to hear about your Polymyalgia and as a fellow sufferer of six years you have my sympathy. Very limiting.

Are you aware of GCA which often comes with Polymyalgia? I ask because you mention pain in your jaw and headaches. The main symptoms of GCA which if not treated can lead to blindness. It’s often overlooked by GPs. If you want further information I suggest you contact PMR/GCA uk. Polymyalgia Rheumatica & Giant Cell Arteritis.

Do hope it isn’t this but better to check it out. Good luck.

[Stavrou1]

Hi So sorry you have been living with it for 6 years , it's rubbish ... Thank you for bringing GCA to my attention!! .

I am aware of it. I have been intouch with helpline . Scary stuff..

My jaw problem has gone. .hopefully it won't come back . I am in contact with my G.P every 2 weeks.

Headaches are on & off!! .. it can be down to a number of reasons , as also have M.E . Chronic fatigue.

I had my accunputure telephone assessment yesterday . Hoping to start in a couple of weeks .. 🙏 . Take care 🙂