G’day, new here

Harpy

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Oct 12, 2022
Messages
141
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DX FIBRO
Diagnosis
11/2004
Country
AU
State
WA
Hey cookiebaker, our cats the same , she is too busy sleeping to get a photo. You doggie diamond is gorgeous! Is she a staffy ? We have my sons staffy , what a beautiful natured dog they are. They look fierce but are a big softy.
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
672
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DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Hey cookiebaker, our cats the same , she is too busy sleeping to get a photo. You doggie diamond is gorgeous! Is she a staffy ? We have my sons staffy , what a beautiful natured dog they are. They look fierce but are a big softy.
Yes, Diamond is a staffie - or as we call them here in the States - a Pittie, and she is a big sweetie with people. Loves pets and cuddles. They are absolutely great dogs when they are raised right.
The last one we had before her was a Pittie/Shar pei mix - strange looking beast of a dog, but he was a wonderful companion and an excellent watch dog (we live in the country so nice to have) I really do miss him a lot. We lost him sooner than we should have due to a tumor that developed at the back of his tongue.
 

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Auriel

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976
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DX FIBRO
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08/2006
Country
UK
State
UK
Yes, Diamond is a staffie - or as we call them here in the States - a Pittie, and she is a big sweetie with people. Loves pets and cuddles. They are absolutely great dogs when they are raised right.
The last one we had before her was a Pittie/Shar pei mix - strange looking beast of a dog, but he was a wonderful companion and an excellent watch dog (we live in the country so nice to have) I really do miss him a lot. We lost him sooner than we should have due to a tumor that developed at the back of his tongue.
He looks so cuddly and friendly, if I'd ever met him I would've just wanted to give him a big fuss. its hearbreaking when they go, pets are special 💜💙💜
 

cookiebaker

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Jul 26, 2022
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He looks so cuddly and friendly, if I'd ever met him I would've just wanted to give him a big fuss. its hearbreaking when they go, pets are special 💜💙💜
1st time meeting him, i would not recommend it, LOL, but once he got to know you, and he liked you, cuddles were very welcome. He was not the friendliest with people he did not know - that was the shar pei in him... proper introductions, and a little time, and he was usually ok. there were a couple people over the years that he decided he didn't like - funny thing is, he was usually correct in his judgements.

And yes, it is heartbreaking when they go... I was with him when he went to sleep for the last time... He was always there for us, I had to be there for him. He holds a very special place in my heart. 💜 💖 💜
 

EzbG

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Joined
Sep 4, 2022
Messages
28
Reason
DX FIBRO
Diagnosis
08/1997
Country
US
State
CA
“oh my word the fatigue is so bad it’s bone aching” “cocktail of medication path, creams, tens, constantly have a heat pack on me somewhere”
Hi Harpy,
Just now seeing your opening post. I have failed lumbar fusion, with nerve damage caused by a bad surgeon. Long story short, I understand what you are going through, especially all the things used to help. Suggestion, if I may - hot baths really helped me get good sleep when my pain was it’s worst, and during withdrawal (at 1 time I was on 250mcg fentanyl patches, and got my meds down as far as humanly possible & live a life.) There were MANY times I actually slept in the tub!
 

Harpy

Distinguished member
Joined
Oct 12, 2022
Messages
141
Reason
DX FIBRO
Diagnosis
11/2004
Country
AU
State
WA
G’day EzbG, yes that’s one path I don’t want to go down again. I took myself to a pain specialist and took 7 month to be weaned off my cocktail of meds I was on. I vowed to myself never to get that addicted to meds again.
I did hit rock bottom may/June 21, when I self harmed. I just couldn’t do this constant pain and fatigue. It’s no life living like this .
Yes I agree the extra hot bath does help some what but is getting harder and harder for me to get up and out. I’d give anything just for a days release from this pain prison I am in.
Sorry it’s just a really horrible day.
 

sunkacola

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2,446
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DX FIBRO
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00/0000
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Hi @Harpy , Good for you for not doing the treacherous pain medication path.
You say you'd give anything for a day without pain and I know how that was for me...not good. I am wondering which things you are experimenting with in terms of what you eat and your daily activities to find out what will help you.

I ask this because a few years ago I didn't get out of bed without pain medication and was feeling desperate, feeling that pain prison you feel. It took a long time and a lot of patience for me to do all the experimenting I did to find out what would help me, but I did it anyway and kept doing it because I felt it was my only chance to get any semblance of my former life back again. Now I just do the things that work and maintain a life that is not what it used to be, but completely tolerable the majority of the time.

If you have not started that experimentation, I strongly urge you to do it. In my experience, with the people here and my own body, there are really only 3 paths to take with fibro. 1) You take a lot of pain medication and probably get addicted. 2) you don't have a life and live in pain.
3) You carefully and patiently find out what combinations of supplements, physical activity/therapy and mental activity works and what foods work for you and you maintain this daily (or diligently as close to daily as you can) In my opinion the third is the only way to go. This is the everything that you would give for a day's release from the pain.

If you have started and are bogging down or puzzled, please let us support and encourage you.
 

Harpy

Distinguished member
Joined
Oct 12, 2022
Messages
141
Reason
DX FIBRO
Diagnosis
11/2004
Country
AU
State
WA
Thanks sunkacola. When I came off all those medications I restarted on smaller doses and different meds. Sorry but with my fibro and my spine I really can’t survive without em. The difference now it I take a MM as well.

I too believe in if you don’t use it , you lose it. I have a lot of muscle arthropathy so I do make sure I get my steps in. I care for a 1year old every Wednesday and a two year old on a Thursday. I know that caring for my grandkids is a big flare upper , but I would never ever tell my girls as I know they would put them in day care . They really are the only reason I am still here. I do use a pool in summer when the water warms up.

I know my food is healthy, and every day I drink sustagen and take a huge dose of vit D once a month.

But sometimes no matter what you have done or didn’t do these flare up that come outta no where are the most draining ones and can last for months. And really once the kids have gone home I just have my heat pack and little doggy.
 

sunkacola

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Well, Harpy, it sounds to me as if you are doing your best, and it's true that sometimes you are doing all the right things and a flare hits you out of the blue. I would still encourage you to find out if any of the healthy food you are eating is, despite being healthy and good quality, a specific trigger for you. For some people finding that and cutting it from their diet has made a big difference. It could be dairy or nightshade veges or gluten or citrus even. You never know until you find out. Not saying you will for sure fid anything by doing that, either. I just think it's worth a try.

And I wish you the very best. Hang in there and know you are not alone. Though far in distance, we are here for you.
 

Harpy

Distinguished member
Joined
Oct 12, 2022
Messages
141
Reason
DX FIBRO
Diagnosis
11/2004
Country
AU
State
WA
Yes I do my best to keep me distracted from the fatigue and pain. I am coeliac so bread and wheat have been out of my life for many years. though I never gave thought to citrus? Love my oranges and orange juice. Nightshade veggies? You got me there, what are they? I add turmeric in my cooking and ginger helps with the nausea from the meds.
 

sunkacola

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That's the thing....we never give a thought to specifically what we eat unless we focus on it. I certainly never did, just ate what I knew to be healthy food. And, of course, there may not be a food trigger for you at all. For some people there isn't. For some people, meat is a trigger for pain. for me, my body doesn't do well at all unless I eat meat pretty regularly.

For information on nightshade veges, just Google "nightshade vegetables" and you will get all the info you need.
 

Harpy

Distinguished member
Joined
Oct 12, 2022
Messages
141
Reason
DX FIBRO
Diagnosis
11/2004
Country
AU
State
WA
I have figured out dairy causes big sinus and saliva issues. Today I am actually feeling, may I dare to say it ( Ok ) .
I have had my third injection in three days . Today was in my C2/3. So for the next three days I am not going to do much and hopefully these will work. I have another injection next Thursday, that will go in my C 5/6. So hopefully I will be at an ok pain level to enjoy Christmas .
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
672
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Absolutely wonderful that you are feeling even a little better, @Harpy! I hope it continues for you.

Today i was supposed to be getting my injection at the C5/6 level.. should be there right now in fact.. but no.. unexpected absence of the doc, so it has been moved to next Tuesday.. arrgh. But i guess that is better than the alternative which would be at least a month out.
 

Harpy

Distinguished member
Joined
Oct 12, 2022
Messages
141
Reason
DX FIBRO
Diagnosis
11/2004
Country
AU
State
WA
Sure is great to get even a little relief. I know it’s early days and still got 11 days for full effectiveness of injections to work. So I will be doing bare minimum to make sure it all helps.
See I have a bad habit of over doing things I know I very well couldn’t do before injections and I bugger up the procedures and back at square one.
Oh that’s a shame cookiebaker, but yes a week is much better than a months wait.
 
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