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CatchMyPain Community and Pain Diary App to manage chronic illness

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Aug 29, 2015 5:21 PM

Hia everyone i too have fibro and a buldging disc s1/l5, ostio arthritis bone on bone right knee & had recent keyhole op i had to fight like hell for as im a "CHRONIC" pain patient surgery wouldnt benifit me jeezzzz how would it not!! Had op & now they say oh come back in 3mths & we will discuss knee replacement why not do it in 1st place!!?? & now left is grippey had 2 steroid jabs in it but pain round knee and outer upper leg awful!!! & on top of that perimenopause :( :( on heaps of medz & also hip burstitis left hip due to waiting for op for far to long and have changes in left hip too im in the UK & im not sure how this works yet but this is me has anyone else had hip burstitis & when i even try a simple task like washing up or trying too pain unreal lower back cant describe it anyway hia to all xx

Aug 29, 2015 8:00 PM

You'll find tons of support here. I'm new to this site also & found many caring people. I understand the gut ringeing pain in the back, it can & does cripple you. Many people on this site have encouraging information, as they share their experiences you'll find a bit odd relief and hopefully some answers to your questions. Welcome and just know your in the right place.

Aug 29, 2015 8:26 PM

Thank you & yeah the back pain is mind blowing my gp said i have a high pain barrier as have had so many things done but my back nooooooo surgeon said at appt last week i will b writting to my gp to refer me re: back & hip as i cant remember last time i saw anyone from back clinic etc so hopefully something will get done as for hip no idea yet.Its my job ive worked so hard for that i dont know if ill b able to go back to it :( im glad i found this app shame didnt come accross it ages ago!! When ur back at its worst do u find even going up stairs at home u have to really grab hold of hand rail & force ur self up the stairs? Or just putting 1 foot in front of the other? Almost feels like something is going to snap!! & thank u for ur reply

Aug 29, 2015 10:47 PM

Welcome Debzwilts. I also have the OA in both knew and ask down my spine, along with fibro and many other issues. It's very frustrating to me too, when docs look at me and say, "well you need surgery but you have to many problems and I won't do it." If I could get the bone spur of our the left knee then I would stop bearing weight more on the right, which has caused even worse grinding and crunching. I mean really, if they would fix what could be done to make things easier, then we might have a lot less unnecessary pain!

I've had so many injx (injections) in my shoulder and hip bursae I lost count. They usually flare in the winter cold. My pain specialist has done two series of three injx each, in my cervical, thoracic and lumbosacral areas, which honestly has brought the longest and most relief to my OA spine pain. I also have other things going on but with the brain fog I'm stressing to remember those fancy words, something with facets. I use a lot of voltaren gel, muscle relaxers, & rice packs (rice filled tube socks, knows our search closed. Microwaveable & freezable). And thankfully my sjogrens med, Plaquenil, has helped a lot too. I'm not sure what all you've tried but everyone has good suggestions. I now take magnesium due to so much positive feedback about it. I old you'll find as much help and compassion in the community to! 🙏🌼

Aug 30, 2015 4:49 AM

Aawwww thank you for ur reply and i agree if the surgeons fixed what needed fixing it would b a huge help!! Obviously more painful for us but worth it this lady at gwh hospital said to me oh its because im a chronic pain patient its why no knee op i kicked some "Butt"!! & via my MP too and just because of my age too shouldnt put a stop to a op needed but now after op its ummm if same in 3mths we will discuss new knee why o why not do it 1st time :( :( :( i dont feel in control anymore as due to the way theyve gone about things i dont know if i can go back to my job even tho at end of each day i was "Done"!! & straight into bed kept my brain active quite fed up really like u i use volterol 24hr gel but doesnt di much for me, do u mean injections into base of spine? Had those & yeah took a lot away didnt last long for me tho, i had a steroid inj in hip at my local doctors but isnt working that well at min & 2 in left knee wow those 2 really hurt!! Ive heard about magnesium will i need to check with my gp before i take as am on a load of medz! Like most of us that just take edge off could u please tel me more about the rice filled tube socks as ive not heard of that before thank you i havent got any muscle relaxers do u mean diazepen? Allergic to that 1 & i empathize with brain fogg i have been foggy but wow saturday a simple password set up for sky & my tablet threw me and i couldnt do it nor even talk about it it zapped me of any energy i had left thank you for ur reply & i am so glad i found this app :) :) x

Aug 31, 2015 7:07 PM

You got it right on the back injx. Many aren't having as much successes as me, but it's a blessing since I can't take most normal pain rx. As for the magnesium, you can ask your pharmacist or doctor if there are any contraindications between it and your meds. A prior coworker had a rice filled sachet her mother made, squared and stitched. She said she'd hear it in the microwave (30-60 second increments) or chilled it in the freezer. I am no longer able to sew and I wanted one, so I put rice in a tube sock then there a knot in the end. It's wonderful, easy and cheaper than store bought bead filled products. Brain fog or not, one doc says I have dementia, things I use to do easily are a struggle. And the worse I feel physically the more foggy I am. Hope you have a good night! 🙏🌼

Sep 01, 2015 1:25 AM

Hia im sure the back injectiona are a blessing 4u if u cant take most medz poor you! :( & when im nxt in dr's ill defo ask re magnesium ill try anything if it helps & the rice bags sound a great idea & sorry to ask how old are you? & dementia??? How did he come about that diagnosis!!?? Brain fogg is a right pain in butt esp mid sentance & ummmm what was i saying aaahhhhh hope u have a pain free a day as u can my daughter off for surgery today so nerves r shot im sure she will b fine but u cant help but worry x

Sep 01, 2015 12:32 PM

Debzwilts, thank you. I said a prayer for your daughter. I worry about mine also. I'm 54, almost. I've had worsening memory problems for 7 years, but in the last 2 years it's become worse, and noticeable to others. It's not just the sudden lapse of the word I was about to say. I can't remember names of people I've known for years. I'm getting lost and don't remember places I've driven to for years. I'm forgetting medications, not able to balance the checkbook register, or meds up paying bills. It's just a combination of things. I've typed by touch since highschool. I should know the location of the letters and numbers on a keyboard, because all of my jobs required it. In the last two months I'm misspelling or can't locate the letters without looking at the keyboard. I'm constantly retyping or backspacing to correct. I was having a lot of headaches between 2011 & 2014. I had an MRI in both 2012 & 2014. There was a definite changes in the right frontal lobe. I was put through a neuro-psychological exam, and according to my test results the doctor said it's pseudodementia (pseudo- because he couldn't say what caused it). The Mayo doc I'm seeing said he's not sure of the diagnosis, so he is having me reevaluated and tested later this month. I'm just hoping it's not Alzheimer's, as my grandmother had it, and now my dad does. He actually thinks something in my brain is the cause of the memory, dizziness, imbalance, & tremors. I'm not stressing over it though. I'm just trusting the tests will give us the answers. I hope your daughter does well! Have a blessed day! 🙏🌼

Sep 01, 2015 12:46 PM

Hia and thank you for ur prayer shes now at home recovering bless her it was her 1st surgery were as im used to it now :( & blimey poor you hunni cant be pleasent for you at all & ill keep my fingers crossed its not Altzimers aaawwwwwwww could b something else tho that medz could help with i too get dizzy spells when i go to lie down & if i bend suddenly my gp called it a name i forget seeing ENT this mth for a hearing test a where i work its a small kitchen with a HUGE!! Extractor fan after work ears buzzing & people say im talking louder etc im not at work tho as had knee op & since then can of worms opened so dont know when ill b fit enough to go back even if i do :( it was for 27hrs a week & all i did was job my daughter does everything else as im done & in agony in bed it has got me down but my pysio said forget all & work!! Think of u & ur health bless had another accupuncture session today OUCH when they go in & worse when twisted!! Dont know if it will help but ill try anything!! Hope ur as well and painfree as u can be x

Sep 01, 2015 3:50 PM

Welcome debz!

I think I'm a lot more fortunate than most people here. People like flappy has so much going on for them and are still able to support others. Without them, this community won't be as good or maybe it won't be a community at all.

I've found this app a couple of months back after my facet jinx and neuropathy surgery. I feel for you when you mentioned struggling to cope with decisions made by doctors/specialists. I too am a victim. I need to see the doctor minimum once a week for my meds. My specialist is literally 5000 miles away from me and takes months to even get an appointment in. There are closer clinics, but still 2000miles away. (I'm from an isolated island). My specialist has been good to me and that's why I'm willing to travel so far. After surgery, I'm still in a lot of pain, probably more so after the surgery in a different way. Because I'm travelling so far, they couldn't fix me up even after staying almost a month there. My expenses was piling up then.

I have learnt healing takes time one way or the other. Our pain will not go away, it will only be minimised as we have suffered so long with pain, our muscles and health had deteriorated for a long period, we need a lot of time and patient to get back 70% of our original health. My advice is treasure the good days and don't be afraid to consult your doctors what meds works for you or if your work is really bad for your health. We only have one life, the sooner we find our happiness, may it be meds or others, don't be afraid to ask. I rather die happy knowing I've done the most I can under my circumstances than die being miserable all my life.

Blabbering a lot now sorry. Welcome to your new found family. You will definitely receive a lot of good advice from fellow sufferers as I did. :)

Sep 02, 2015 10:04 AM

Eloquently said Octobot! Patience with ourselves is key, that and the reality that we will never be at 100% again. 🙏🌼

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