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Flutterbug9’s space

Flutterbug9’s space

After few chats with Tyme earlier this year plus recent posts on different threads about my physical health these year I’ve decided to set up this thread.

background summary

In my early 20’s I was first diagnosed with having OA, third generation to be diagnosed with OA. Im now early 60’s and have moderate to severe OA is various joints, worst being my entire spine. Late last year I started having quite painful OA flare ups which included feeling like one section of my lower back was on fire (caused by inflammation) and struggling to use my hands. All possibly options for treatment/pain relief available to my GP were having little or no impact. Earlier this year I was referred to local pain management clinic with initial appointment with Dr MK, my pain management Dr, in approx June this year.

Since initial appointment with Dr MK I have had diagnostic test which was found to be successful in pin pointing the nerves causing pain in my lumber area and have had RFA which helped reduce some of my pain to a level that deemed the procedure successful.

during post RFA review appointment with Dr MK it was mutually agreed on to continue with referral for infusion which involved me being in pain management ward at local hospital for entire week. Infusion, if successful, to eliminate all pain (or reduce even further pain levels).

First week of December 2025

downside of the infusion can be variety of side effects. I packed (ended up over packing) variety of things for a ‘if I’m affected by all side effects’. Side effects I had a different times during the week - overwhelming need to sleep immediately, unsteady on my feet, headache, blurred vision, feeling of thick head (similar to really bad head cold head), loss of interest in / inability to concentrate on things, teary (all normal side effects). Each evening Dr MK visited me answering any questions, providing reassurance and information in easy to understand words.

discharged from hospital this morning, advised not to drive, handle cash or make important decisions etc for 48hours. Came home feeling tired and bit unsteady on my feet, normal reactions.

ive been home for approx 7hrs by now. Feeling much better within myself. Main thing, feeling almost 100% pain free (getting occasional stab of pain into lumber spinal area. Haven’t feel so good (ie pain free) whilst sitting and working around for approx 12months. It’s not a permanent fix and unknown how long I will have the benefit for. Knowing this is very low priority for me. Still can’t believe my entire spine is pain free. 😍😍

@AlwaysMyself @Bunniekins @Chasingsunsets @Blackcloud @tyme @Jynx @MissGremlin @Cuddlebear @heartathome @Captain24 @REDLINEZ750 @AuntGlow (hoping I’ve tag everyone who has supported me recently, apologies if I have missed anyone. Please feel free to tag if I’ve missed anyone)

92 replies

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In response to: Flutterbug9’s space

Re: Flutterbug9’s space

@Cuddlebear @MissGremlin @Bunniekins @Captain24 @Bow

I had appointment with GP yesterday. Next week I’ve got appointment for X-ray and ultrasound of left shoulder plus X-ray of both hands. Script issued by GP for an anti inflammatory med. something unpleasant said by GP, I managed to get home prior to going into tears.

phone call Wednesday morning from Pain Managenent group. I’m booked in to go into hospital in 10days time for day procedure. I’ve been advised I’m on morning list to have Pulsed Radiofrequency Neurotomy in right shoulder.

its all happening so quick and my nervous systems is not coping. Took me 7 attempts to find people who can drive me to and from the hospital. One person will drive me out and another will bring me home.

It all got too much. I went into panic mode due to getting worried I could find someone to drive me home.

tears …. This entire week, the slightest thing sends me into tears.

atm, I’m waking every morning with both shoulders feel stiff and sore with both hands feeling weak. Right shoulder is the worst, including pain from shoulder into front of chest plus collarbone. Night meds are helping get reasonable sleep. Challenge is trying to find spot that causes least amount of pain into shoulderblade after getting into bed.

one knuckle on my right index finger has become stiff and unable to straighten. Any pressure on the knuckle of attempts to straighten it cause lot of pain.

Ive told my GP I want referral to a specific orthopaedic surgeon, need results and report from X-ray first

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

@Flutterbug9 I'm so sorry that the GP said something unpleasant to you sweet and i can imagine it would have been very upsetting. I'm glad you've got an xray coming up and anti inflammatory meds.

I'm really hoping all goes well with the day procedure and that it helps to ease the pain you've been in constantly. Going into a panic is completely understandable given how quickly it's all happening and how hard it was to find people to help, but you got through it sweet and I'm proud of you for that.

Waking in pain every morning is horrible, I'm hoping this will change when you can get the procedure done. Glad the meds are helping you get a reasonable sleep. The knuckle sounds very painful and I hope you can get relief from that soon too.

Sending so much love and hugs sweetheart ❤️.

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

@Flutterbug9 Hello my friend. How are you?

I’m glad you got your script but it sounds like you had a bad experience with GP. I’m really sorry that it happened and that you’ve been left crying.

I can totally understand the panic and anxiety of being scheduled for hospital with short notice. Then having to try to find people who can pick you up and take you home. It takes a lot to do thet when you are unwell. I’m glad you have found two people that can help. My nervous system can’t cope with those things either. I wish I had something to offer thwt might help but I honestly just don’t know. For me nothing seems to help and I don’t want to offer suggestions that might trigger negative experiences.

I can understand going into panic. I’ve been in panic everyday with panick attacks all day. I cry and struggle so much. I can very much relate and you are also experiencing pain which is hard to live with.

I am glad you are managing some sleep with the help of medicine.

I hope the X-ray and investigations being done results and you can then get your referral.

I am thinking of you. I care about how you are. I’m trying to be around Iys just my nervous system is shutdown and I have awful symptoms from this. Thwts the only reason I’m slower to respond.

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

@Cuddlebear I spend more time off the forums than on them and have been doing so for awhile now.

Things don’t feel the same to me following the changes with mods and PSW’s. Things that feel like have led to no PSWs around anymore. I don’t feel there is support or interest regarding the forums from management, CEO and down.

Im struggling to want to logon to the forums.

feel like Im floating lost

Everything has added up and my nervous system is paying the price. Panic attacks, nightmares, isolating and complete lack of interest in everything have become my constant companions

thinking of you and sending hugs

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

Hey @Flutterbug9 ,

I'm hearing you. I'm so so sorry you have not been well and the changes here haven't been the most helpful.

Please know that when we are here, we are here for you.

I hope you can find a way through this difficult time.

Thinking of you.

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

Thanks @tyme

A lot of the time now I feel like you are only person who checks in on members and cares

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

I'm sure others care too. But the change in structure means we are across different services @Flutterbug9

But also true. The forums mean a lot to me and are very close to my heart.

I know you've had your treatment recently. How has that gone?

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

Just saying how I feel @tyme

the week in hospital and the infusion went well. Bit of a hiccup one afternoon, the patch that had been put on the previous day to keep the tube for the infusion in place had completely come off and the tube had come out. Site for infusion gets changed each 2 or 3 days. Mine got moved to a new site approx 15 hours earlier than had been planned. My back appears to feel sore fairly easy still. Could be mixture of reasons. Review in 6 weeks

Couple weeks prior to going into hospital I had X-ray and ultrasound of right shoulder and was treated for bursitis. Benefit of that injection didn’t last 2 weeks. My pain management Dr had been sent copy of scans and report, I have small tear in tendon in right shoulder, some degree of constant pain for approx 7 weeks now with healing due to take many months. https://www.google.com/search?q=tear+in+shoulder+tendon&ie=UTF-8&oe=UTF-8&hl=en-au&client=safari

scans also showed moderate osteoarthritis in right shoulder. Only help pain management group can do is Pulsed Radiofrequency Neurotomy which involves one nerve only and one needle, needle to be inserted into back of my shoulder in 10days time.

due to some limitation in movement, plus pain, in my left shoulder, I’m booked in to have X-ray and ultrasound on left shoulder. Depending on outcome of scans, I might be offered to have Pulsed Radiofrequency Neurotomy in left shoulder. After, what felt, nastily asking why pain management Dr hadn’t requested the scans, my GP expressed concerned with amount of strength I’ve lost in my right hand. (I don’t have the strength the open screw top on long life milk. For 4 weeks prior to knowing I have the tendon tear I played croquet, this might have made the made the tear worse)

xrays also to be taken of both hands prior to referral to orthopaedic surgeon. I can no longer straighten one knuckle in right index finger without causing lots of pain. Am wearing thumb splints each second day which has helped reduce the amount of pain in my thumbs

upsetting thing that happened whilst I was in hospital was being told a cousin 6 mths younger than me has terminal cancer and that his siblings have known for awhile. After his older sister told me she said something to me that shows she is not dealing with things. Words that also hurt due to making my health issues sound unimportant

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

Awww @Flutterbug9 ,

Sorry to hear this is happening. And sorry to hear about your cousin. That's so hard.

I know you have a lot on your plate already, and that added stress can really take it's toll.

As for your sore thumb, is that because of oesteoarthritis too?

You deserve to have the quality of life that allows you to do what you want.

I really hope you get some relief from the pain.

In response to: Re: Flutterbug9’s space

Re: Flutterbug9’s space

Pain in my thumbs is due to osteoarthritis (OA) @tyme

I have thickened knuckles in both thumbs, both index and middle fingers due to OA. I’ve also got OA in one knee, my entire spine, right shoulder. I suspect I’ve got OA in left shoulder also.

due to some physical health conditions, there is almost no meds I can be given to help with pain or inflammation. Options that Pain Management can give me could see me in hospital twice a year for entire week, 2 day stays and 4 over night stays every year for rest of my life. No guarantee any of these will assist with pain reduction.

Im too young to qualify for assistance at home. To have any assistance at home I’ve got to pay 100% of costs charged by private companies.

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