G’day, new here

[Harpy]

Hello , Thanks for the welcome dooi.
harpy here. I have had severe chronic pain the last 24 years and fibro just about 15 years.
I originally injured my lumbar spine on a quad bike , all my own fault. Then at end of 2011, I was rear ended by a person on their mobile phone . Then the force of that shoved my car under the 4wd in front of me. Now I have full spinal problems, I have been down the cocktail of medication path, creams, tens, constantly have a heat pack on me somewhere, I have had 7 years of physiotherapy then a year of chiro ( no I was never cracked ) hydrotherapy. Into my 5 th year with an osteopath , he use’s the massage technique, I do get cupping done every 2 weeks. Dry needling , specially for the migraines. All up I have had 42 spinal injections in the last 3 years. This osteopath has gave me some range of motion back . He is just the best and has even opened up on a Sunday for me.
I have done the full pain management course.
Though for the last two years I have been struggling horrendous night pain. I just can not ease it. I stay up as late as I can and get out of bed early, the less time in bed the better. I have to get up many times a night to walk around to settle it a little but will wake me promptly, it’s horrible. Hope you all are ok.

 

[vickythecat]

Hi Harpy, welcome to the forum.

I'm glad to hear you found an osteopath that has helped you, let's hope everyone suffering find that one person who is really willing and able to help us.

I'm also having huge issues with nights and only last night it occurred to me; it is all because I don't move much when I sleep. I take pain meds to sleep, manage about 4-5 hours but then I wake up burning hell but I'm too exhausted to move a muscle. Not moving vs fatigue is my biggest struggle. A struggle between 'how much to move', when to move, when to push your body, how, when, but what if it hurts, what if the pain becomes worse, but I'm so exhausted etc etc. There is exhaustion but then there is pain, and mental issues, for pain and mental issues I try to move (very basic, even if its just silly dancing to a fun song), but then I end up on the coach exhausted. The horrible cycle of chronic pain, of fibromyalgia.

Lets hope we all find a remedy to it all - at least know you are not alone. Wish you the best!

 

[Harpy]

hi vickythecat , oh my word the fatigue is so bad it’s bone aching. I too try to keep moving. I do my best to get my steps in. I know it’s cruel while walking but it’s worse if I don’t.
yes. Am very lucky to have a good medical team And my osteopath is fantastic, I can tell him anything, he is easier to talk to than my husband.
I have two pain specialists one is a rheumatologist. The pain specialist told me I need to move more and not sit in a chair all day. Oh boy that made me see red, I got my Iwatch and showed him my steps history and very rarely had an idol hour. He was surprised and then tells me to loose weight. I only put on 7 kg because of the lryica. To make my day worse I have put my right knee out , like back last December just out of the blue . Its three times the size as my other knee. What else can go wrong. So over this.
hope you sleep well tonight.

 

[JamieMarc]

Welcome Harpy! You are in good company here. Just wish it was under better circumstances for all of us.

 

[Harpy]

Hello JamieMarc . Yes it’s seems a good forum. lol i agree it definitely would be better under different circumstances. I would much rather not suffer chronic pain/fm.
how do you cope?

 

[JamieMarc]

Good morning Harpy!
Unfortunately, there is no one size fits all solution to fibromyalgia. How do I cope? First of all, for my pain I use a combination of prescription medication, outdoor activities such as cycling and forest hikes, exercise and stretching at home, rest, hobbies and interests, meditation, mindfulness, abstinence from alcohol, healthy eating and a regular sleep pattern. I have probably forgotten something. LOL. When my pain is at its worst and nothing is helping, I know this is going to sound strange, but I embrace the pain, accept that it is a part of me, and won't allow it to rule my life. That being said, during those flare-ups, it is often a sign that I need to stop and take a break. That might mean switching to a different activity or simply lying down for a rest and maybe even a nap. I make sure that the people in my life I care about are aware of my condition, and I take care of myself first. Sometimes that means saying no to something or someone. I could go on and on I think on this topic, LOL, and I don't know if any of what I said was helpful, but it certainly helps to know that I am not alone in this, that I have all of you as well as my friends and my healthcare providers.

 

[sunkacola]

Hi Harpy,

If you have not already done so, please read my post on coping with and managing fibromyalgia. Hope it helps, and let me know if there are any questions.
Welcome to the forum.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Harpy]

Oh jamiemarc, your amazing, to embrace your pain , that’s something I generally can do an my “ normal” pain days , but when the flare up of the blue and last so Dang long. It wears me down to end. what I have named. “Oi”. Over It “ So my osteo and family knows when I say Oi, I am not coping. Then they now to step in to help distract and to just be with me. I had so many hobbies, All I have left is my crochet and macrame. my gardening has moved to hanging baskets on chains Strung from tree to tree. The orchids are all in bloom and looks stunning.
thanks sunkacola, yes I have read the advice for new comers. I got two hours broken sleep last night, that’s the most I have had in weeks.

 

[Auriel]

Harpy i love your profile picture! , that's just adorable ❤

 

[JamieMarc]

Thank you, Harpy. I'm glad that you have family that is there for you. That is something that I don't have. Before I was diagnosed and started getting the right help and understanding how to manage my condition, I had many hobbies as well and was able to be much more active. I still exercise and get out on my bike and go for hikes and try to be active, but just not as much as I used to. I'm also happy to hear that you do have some hobbies that you can still do because I think that is so very important for all of us. I too am a gardener, but since I own a condo it is confined to potted plants. Between the front porch and my garden room I have about 40 potted plants. And even though I don't have family here with me or really anyone who understands what I go through other than all of you, I do have my fur baby, Coby. He is a great comfort to me. He is my little boy.
Hugs to you today and every day, Harpy.

 

[Harpy]

Hi Aurial, that possum in my profile photo is called Rambo. My son made me a few of those possum houses and I have them everywhere lol. He pops his head out when ever we go out lol loves his bananas. But a month ago who we thought was Rambo is now Rambetta. She has a baby with her . So cute. So more fruit treats . Shhh and the odd honey on toast .

 

[Harpy]

JamieMarc oh what I would give to go fishing in my kayak. Your fur baby Cody is he a cat or dog? I have a little dog, Maltese cross foxy. Jelli is her name. My daughter brought me her so I had a cuddle buddy. Oh my she is nothing like the poodles I have always had. Such a little prissy. She can tell when I am down as she walks to the back door . She will look at me then out side. Will do this for ages. Well till I say “ walkies” oh my word she goes off so excited, running between me and the back door. When I get up and open the door. ( that does have a doggy door) she’s off , hunts for a stick once she has it in her mouth she’s gone. lol. But hey she got me up.
I have 3 acreas so I have lots of trees with chain and pots hanging, lol if one tree ever falls think it will look like tree ominos lol.

 

[JamieMarc]

Funny you mentioned kayaking because I moved over here to St Petersburg in February and there are so many places to go kayaking and I'm really looking forward to going in the spring. I have never been kayaking before, just canoeing.
My little fur baby, Coby, is a miniature pinscher Chihuahua mix, a Chipin is what I found out they are called. LOL. He looks like a miniature pinscher more than a chihuahua. He is a great little buddy and my best friend and I don't know what I would do without him. And he has such a big personality! Right now I'm working on getting him down to around 15 lb he's a couple pounds overweight. He's not liking it because he will eat practically anything. LOL. But he is such a great little boy and he brings me so much love and so much comfort.

 

[Harpy]

I used to go out in kayake and be gone all day. If I had bait left I wouldn’t come home lol so no one would offer to come with me lol. I have the sit in kayak. I tried canoeing, couldn’t say in it, flipped it all the time.
I am lucky as my daughter moved across the road and the back of her house in on the water so we have perfect access. Though now I just sit on her jetty in the quiet.
Oh he is a cutie pie. My little Jelli suffers anxiety when I leave. She actually chews her toes nails and feet even if someone else is home.

 

[Auriel]

I used to go out in kayake and be gone all day. If I had bait left I wouldn’t come home lol so no one would offer to come with me lol. I have the sit in kayak. I tried canoeing, couldn’t say in it, flipped it all the time.
I am lucky as my daughter moved across the road and the back of her house in on the water so we have perfect access. Though now I just sit on her jetty in the quiet.
Oh he is a cutie pie. My little Jelli suffers anxiety when I leave. She actually chews her toes nails and feet even if someone else is home. View attachment 3539

I love these doggie pictures (actually I love these any pet pictures )