Introduce Yourself Here.....

Hi all, I'm Dea , I live in Australia and was diagnosed with Polymyalgia rheumatica (PMR) about 7 weeks ago, my Doctor has me on Prednisone tablets of 35mg a day.
She started me on 25mg a day but my levels were staying high, so she put me onto 40mg a day and we are weaning down now. She was worried about the GCA also developing. I hate the tablets and side effects but what else can I do? We are monitoring my blood every 2 weeks and hope to get down to 5mg a day.

I have my days, some good some bad, some real bad. I would love to hear from others out there who also have either PMR or GCA and how they cope .

Many Thanks and I wish you all well : Cheers Dea

Hi Dea,

Welcome to the CPA forum 🙂

I'm sorry for your diagnosis 🙁

I hope you take the time to look through the forum and the site and find some helpful information.
You will also find lots of support and friendship from all of us on here. We are all dealing with our own challenges but the thing we have in common is that we all have pain 🙁
Learning to manage our symptoms and medications is always difficult but having the right team of professionals looking after you will make all he difference.
Good luck and keep us up to date with how things are going.

I'm a bit AWOL at the moment as I'm in the UK as my dad is sick but Peter & Johnno are around to assist you with any pressing matters 🙂

Looking forward to getting to know you
Jo

Hi Dea

Welcome 🙂 I'm sorry to hear that you have been diagnosed with PMR and I hope you have found a great team of Drs that are helping you. If you need to know anything or just vent as this is a great place for this.
Hoping I'm making sense as my pain meds have kicked in and I'm getting a bit sleepy.
Take care and btw.......love you doggies :cheer:

Hi,

My name is Dave Matthews. 6 months ago I was unfortunately involved in a pretty serious motor vehicle accident. As a result of this I have been left with quite debilitating chronic nerve pain that affects both of my legs. This has impacted heavily on my quality of life.

I have tried painkillers prescribed by my doctor which were ok but left me very drowsy and quite lethargic. Then I heard about a new capsule which could be bought from a pharmacy. These capsules which don't need a prescription are excellent. They provide a huge relief in my nerve pain and when used in combination with a TENS machine have given me a new lease on life. I can now get around much easier without being groggy all the time.

I wanted to share this information because I want other people who had pain like me to try out these capsules. They are called PEA capsules and they have worked surprisingly well for me. I just want people to know that there are options out there that you don't need to see a doctor for.

Cheers

Dave

Hey Dave,
Welcome to CPA sorry to hear that you were in a bad accident and hope you are on the mend generally we don't allow the promotion of medication we suggest people talk to their GP and get their opinion before using any over the counter medication.
This could also be discussed with your local pharmacist as non prescribed medication could cause strange after effects.

Johnno

Welcome to the site Terry

There is heaps of stuff in here and everyone is friendly and willing to share if they think they can help. As with everything that helps some doesn't help others. It is all personal. I don't know when your MVA was but I assume you put an insurance claim in. This can feel like more trouble than what it's worth. Only you can make that decision.

I hope you find the site helpful, just cruise around and check it out.

Marley

Hi everyone my name's Jacquie and l'm new to this forum. I've suffered from chronic pain for 3 1/2 years after a car accident. The pain is in my neck, across my shoulders, down my entire back which affects my legs where l need the aid of a stick. I'm also suffering from severe depression as a result. Being told my condition is permanent is what gutted me the most. Going from being such an active, constantly on the go person to a person who couldn't even go to the toilet without a walker is mind shattering. But then l thought I'm alive, I'm here for my family. Even though I'm in this constant pain there's always someone else worse off than me. Personally it's still a struggle with my cp, but also 3 weeks ago my teenage daughter was diagnosed with a personality disorder and in the 3 years since the accident my dad has been diagnosed with cancer 4 times.
I've learnt a lot of ways on how to manage my cp but l'm hoping with the help of people who understand where l'm coming from l'll learn that little bit more.
PS I apologise if l rambled on a bit 😉

Hi Dancerdolphin,

Welcome and bugger, what condition are you in what have you been diagnosed with having.
CP is a pain (excuse the pun) but you have come to the right place for help on your journey there is a lot of help to be had on the forum and you can expect some support and hugs from the people who honestly care.
Depression can be devastating but if you have the right support ie. phsychologist/phsychiatrist who can give you ways to combat it and a caring family .
So please don't be scared to cry out for help.
Johnno

Hi Jacquie

As Johnno said CP is a bugger and so is depression. I was like yourself, an always on the go person until I was diagnosed with Fibromyalgia and now as I'm getting older the arthritis has set in. I've already had surgery on my right thumb for arthritis and was due to have my left thumb done but now I am waiting to see a Neurosurgeon for Carpel Tunnel.
Welcome to the group and ask anything or even have a whinge, there's a forum for everything.

Hugs

Thanks guys! It's actually been the best thing to find this forum. Since the last time l was on is been it's been in the back of my mind that l need to get back on here but in a good way. To answer your question Johnno l was never diagnosed with anything specific. I suffered severe whiplash, hurt my shoulder and top of back and bruises all over but about 6 months later was walking when massive pain erupted down my whole back and l couldn't walk. People couldn't even touch me. I could hardly move and to move my legs l had to use my hands or get someone else to. It took the doctors over 8 months to tell me that it was chronic pain and that it was permanent (after all the testing of course).
Tequilablue l've known someone whose had carpel tunnel and it's not easy, especially with arthritis as well. I hope the operation is not too far away. Do you have someone to help you after the operation?

Hey Dancerdolphin,
Have you seen a nuerosurgeon? The reason I ask as I suffered severe tennis & golfers elbow both arms and was on anti inflammatory meds for four years it took severe nerve pain for a nuerosurgeon to find a prolapsed disc at C5 -C6 he prescribed a sheath guided cortisone shot into the disc which was done and lasted for about a month , I saw another useless cretin who said we could operate its up to you (pay your bill on the way out) I ended up going to see a third nuerosurgeon who saw the first MRI and said"oh shit!" I asked if that was a good one or a bad one and she looked at me and said a bad one she ordered a full spinal MRI (an hour in the tunnel) a CT with nuclear injection and three neck X-Ray's I went back with the scans etc and she started booking me in for ACDF a removal of the disc between C5 & C6 it was in pieces and close to doing some major damage to my spinal chord , I asked what if I didn't want to go ahead with surgery she looked at me and said surgery or quadraplegia your choice.
So don't take the first answer get a second opinion even a third one

Johnno

Hey Johnno
They have never given me an actual diagnosis, except chronic pain. I've had cat scans, mri's etc but they have all come back clear, but I could ask my pain specialist about it. At the moment I'm waiting to go into hospital to have manipulation done on my frozen shoulder that's been useless for 10 months. But I have to admit anything to do with myself has been put on the back burner this last month or so and I've been concentrating on my 16 year old daughter who has recently been diagnosed with a personality disorder but I will ask about neurosurgeon at my next appointment.

cheers and hugs
Jacquie

Hi Guys, I'm Mel, 42, married Mother of an 8yo girl and a 6yo boy. I've been diagnosed with myofascial pain syndrome and fibromyalgia (which my Doc prefers just to call chronic pain) and have been suffering for 17 years since a car accident. My pain is primarily in my neck and shoulders so I suffer a lot of headaches and migraines. I also have IBS with malabsorption issues so I don't get adequate nutrition from food.

I did an Adapt course at a Pain Clinic about 10 years ago which I found really helpful at the time but it just doesn't seem to be working for me now, painkillers don't do anything and I had injections in my trigger points just over a week ago and I think my pain has actually gotten worse since then. I'm on Citalopram for depression, Seroquel for Anxiety, Vitamin D for deficiency and have just been put back on Endep to try and help me sleep; I'm still not getting to sleep until some ungodly hour of the morning even if I take them earlier. I've had to give up work because the pain, the IBS and a couple of other health problems which are minor comparatively make it impossible.

I'm really down ATM. I was really hoping the injections would make a world of difference and waiting hopefully for the three months it took me to get in and it then not paying off has dropped me hard. I want to die. Let me make it clear I will not kill myself as my family has been through enough (lost my Mum in a drowning accident 4 years ago) and my children don't deserve to have been brought into this world only to be abandoned but I do not wish to be alive in this body anymore. I know as the pain eases up (whenever that may be) that I feel a little better but right now I just can't imagine another 40 to 50 years of existing like this.

I don't really have a support network either which doesn't help things. My husband gets angry with me when I'm in pain and can't contribute and calls me names etc. and says it's my fault. My Dad and my Brother just ignore the problem because they just take for granted that I'll keep pushing on.

Sorry for being a downer but if anyone understands I'm sure you guys will. Thanks for listening.

Mel xxx

Hi Mel,
I too have fibro with pain mainly in the neck and shoulders. I have had it for nearly 25 years. I understand the feeling on not wanting to kill yourself, but just finding it so hard to go on. Everyone here is really nice and you will find support here. Support is very important and I feel for you not having any. Please feel free to contact me if you wish to chat.
Ann

Thank you Ann, that's very kind of you xxx