New to Forum : My name is Anne...I was diagnosed... - PMRGCAuk

PMRGCAuk

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My name is Anne...I was diagnosed 2 years ago with polymyalgia rheumatica, 5 months later with temporal arteritis, and then later with fibromyalgia. The inflammatory disease trifecta.

Life has changed drastically, as many have expressed on their post. I am absolutely frustrated. No energy at all. Very little activity if any and a reduced lifestyle.

How do people deal with these energy sucking diseases! I am back to making jewelry and learning about batik water coloring. Now trying to add more sedate activities.

Just had a neurological tests on my hands which are tingling and feeling numb. The neurologists said some of my neural pathways are slowing down due to inflammation, but do not need carpal carpal tunnel surgery yet.

Has anyone had numbness in hands and difficulty with debilitating fatigue. How do you cope? Any suggestions? I feel so alone with these diseases.

11 Replies

My heart goes out to you with this trifecta. (First I’ve heard of this trio from Hell), altogether that is. Early on I had the numbness in hands and dropped everything. Much later on I got pain in the hands and felt really sorry for myself because the pain was nonstop and the hands are the one thing we use all the time. Lots of tears.

You will get great support here and advice. Please know you are never alone. It’s a journey we all take together.

in reply to ConventCassie

Thank you for your encouragement. I know others are on this journey and that helps!

You are not alone. I am sure others with a combination of these will come forward. I only am experiencing PMR for which I am trying to work with my diet to help. I have an acquaintance who has lupus and another with fibromyalgia and they have convinced me that changing their diet has made a huge improvement. Have you tried that at all. I know there are many searchable diet tips on this site and no doubt all over Health Unlocked that might help. Or just google antiinflammation diet or auto immune diets. I don't know if it will work or not. WISH I had enough will power to find out. Still working on that one! Best to you. Also if you have a chance perhaps my yoga relaxation and easy exercises might help! here you are. sites.google.com/a/apps.hop...

Those sites should help us all.

in reply to yogabonnie

Thanks yogabonnie!

Hello,

I have RA, GCA and fibro. The first two I've had for years, then fibro arrived a few months ago, and the pain from that nearly made me want to throw in the towel! I've had bad reactions to gabapentin and the other one whose name I can't remember, and now take morphine at night to enable me to sleep. That at least helps me to do my gardening and painting, which are my two loves, and I spend as much time outside as possible - nature is a great healer, as we all know. Try to find solace in doing the things you are capable of, then you won't mind so much about the things you can't manage any more. All the best.

Hi Astahl, I was just diagnosed with PMR and GCA in November 2017 and YES, I started experiencing the numb, tingling, burning sensation in BOTH my feet and hands in March. I have been on high doses (80mg to 40Mg) of Pred the whole time and attributed the sensation to the meds; but I spoke to Rheumy (who has ordered a Electromyography) to find the cause, as she does not think it is med related. It is much worse in my feet than my hands; my feet feel freezing cold, yet burning at same time. They are numb, yet hurt. It's the weirdest sensation! In my hand it's the tips of fingers that are always just numb...

I cannot imagine having the "inflammatory disease trifecta." Two is definitely too many for me! It so sucks!!!! I hope you find some peace soon... maybe the batiking and jewellery making will at least bring you peace of mind. All the best.

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Sorry to spoil your trifecta - but fibromyalgia is NOT an inflammatory disorder. Which is why it never responds to pred. Despite what some doctors claim...

The debilitating fatigue is a part of almost all autoimmune disease and the pred does not have any real effect on that - it must be managed by pacing and resting appropriately. This is a post with a set of links to help understand it better:

healthunlocked.com/pmrgcauk......

Carpal tunnel syndrome is commonly part of PMR and often improves with the higher doses of pred. You don't say what dose you are on - maybe you would function better with a slightly higher dose?

I wrote it wrong. This is an abrupt reply. Not appreciated.

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yogabonnie in reply to

hi. I am not quite sure to whom the "not appreciated" comment is addressed.. if it is to PMR Pro.. who wrote just above you do not be offended. She is amazing, hugely helpful and sticks to the facts!!! She has always pointed out our errors.. but has advice which is wonderful. Always good knowing where we go wrong when dealing with a strange and complex illness.

Hello and welcome to the forum. I am glad that you found us! In a sense you answered your own question about adapting to these debilitating diseases. Your jewellery making and learning batik water colouring are a perfect way of focusing on what you CAN do and having a creative outlet.

Along with the majority on here I can answer a resounding yes to the question about debilitating fatigue. The only solution I have found is to have a regular nap in the middle of the day. It is a discipline that I’ve had to learn, although it sometimes makes me feel like a naughty child, sent to bed when everyone else is having fun. I seem to get a lot more out of the evenings.

I would be interested to know what combination of circumstances led to your body “ imploding” like this.

You really need to focus on yourself now and become a health nut. Plenty of rest, a very good diet, eliminating sugar, processed foods, too many carbohydrates . You really need to avoid stressful situations and vexatious people as much as possible. We have no energy to spare for energy stealers. I know exactly what my precursors were now but a bit like an oncoming train, I don’t know how I could have dodged them. For all of us we need a whole body and mind recovery. It sounds like you are beginning to do just that.

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