Help needed -- direction of travel

[BenHall1]

I am an active 79 year old located down in the pointy end of Cornwall, UK. I have led a healthy life except for the onset of Atrial Fibrillation at 65 (2010) and at 71 (2015), the onset of osteoarthritis in right knee. This is now just beginning to affect left knee but is all manageable at this stage.

What is now becoming unmanageable is pain occurring in both osteoarthritic shoulders. The right shoulder has been managed by a cortisone ( I think ) injection into the right shoulder joint on 1 April 2022. Bliss - until now.

My massive problem now is my left shoulder - producing pain .... beyond what I thought was possible. Whilst this is a grumbling process during the day and all very tolerable what is now impossible to deal with is disruptive sleep caused by my tossing and turning and ending up on my left side with the accompanying pain in my left shoulder ... major pain.

I have the misfortune to be registered with Britains greatest 'Don't care' GP Surgery where my GP doesn't even grant me a telephone discussion to discuss the opportunity of an similar injection into the left shoulder joint BUT rather sends a message via the Receptionist that I need to see a Physio as the first step. I have had one session with the surgery Physio and the next is on 5 December. By the way, my range of movement in my left shoulder is such that I can now no longer put on a shirt or a jacket without entering the world of amazing pain or without my wife helping me to dress and thus avoid the world of pain. Now the world of pain, the world of loss of sleep is - without doubt - affecting my otherwise good nature and personality. I am also seeing an Osteopath to help try and improve my range of movement. Over the years I have tended to get better results from an Osteo than from a Chiropractor.

So I have a number of thoughts I wonder if I can throw out there .... in the (new, post CoVid) British NHS is there a process, a protocol that needs to be followed from the point where you need to see a GP to when you actually see one to when a medically qualified healthcare professional sets in motion an approved treatment ... interestingly, thus far no one has discussed getting X-Rays !! My last lot of shoulder X-Rays for both shoulders were 2018 and more again 2020. none since.

Depending on the outcome of my next Physio meeting on 5 December I may go down the complaint route and probably the first port of call will be the Care Quality Commission - which have already written up an "uncharitable" report on this surgery of mine. I have no problem in suffering pain on the understanding I exercise my right to drag this surgery through an equally painful dispute process.

If anyone is able to offer suggestions on pain relief ... even the green, leafy stuff (CBD ) because I'm now getting so desperate to get sleep. If anyone wishes to offer me the benefit of their experiences in dealing with osteopathic pain I'd welcome it.

Thanks for reading my moan.

John

[DorsetLady]

hi,

Your shoulders need x-raying again - please request your “don’t care” surgery to do so…. If you are to be referred to ortho clinic or muscular skeletal section therein you will need current ones.

I have osteoarthritis- 3 replacements to date - one being shoulder -other being kept under control at the moment by Flexiseq -

flexiseq.com

Also use this on occasions - 5kind.com [extra strong]

Both not cheap, but cheaper on the ubiquitous online store beginning with A….

Just an aside, is it a possibility to a get a recommendation from your osteopath to get shoulders Xrays privately-if GP is not forthcoming…

[BenHall1 in reply to DorsetLady]

DorsetLady,

Thank you for your comments and recommendations. Really appreciated. Yes the online A firm isn't always the cheapest ... on a wide range of products. I will ask my Osteo next week when we meet. I am very concerned about my GP surgery - even more so when in the area I live or even nearby there isn't a great choice of alternatives and both are heavily oversubscribed ! Either way, I will explore getting the issues of Xrays addressed, if necessary going private.

Thanks again.

John

[GrannySmithgs5]

Hi Ben , pain is so debilitating and degrading but I’m afraid I didn’t find anything that helped . Here in Devon my GP referred me to Physio , it was from here X-rays were ordered and following assessment a referral for surgery . I wish you luck with your GP , I wrote mine a “to the point “letter, making sure they understood the level of pain . Made a face to face appointment and gave the letter to be read in front of me . Made things happen !! Jean x

[BenHall1 in reply to GrannySmithgs5]

Hi GrannySmith,

Thank you for your comments. I have already had to deal with our local Hospital Trust by reporting them to my MP. Yes, kicking ass certainly gets results. Y'know what the amazing thing is .......... its ages since my last lot of X-Rays ( years), so far nobody has suggested it .. now I would of thought the first thing to do was revisit the earlier aged X-Rays and order new ones to get a grip on changes. What changes have occurred and how significant they are. Coincidently, I also have an appointment with Physio next week and I will do as you suggest .... hand deliver to her my 'to the point letter' along with recommendations on what she can do with it.

I could handle the pain during the day better, if I could get a full nights sleep without waking up in pain once or twice. For me, there is no doubt the shoulder pain is worse than my knee problems ( resulting in a knee replacement) ever were.

Thank you for your time.

John

[GrannySmithgs5]

My letter stressed the level of pain and the inability to sleep , both of which scored high on the physo’s chart . Personal care etc were also relevant. I also mentioned the lack of suitable analgesia for patients with AF. I can’t remember the score needed for referral to the ortho clinic, it all appeared to be a quicker system than via GP .

Jean he

[Happyrosie]

hello BenHall11 I’ve read your post and others’ comments. Here are mine!

In my area, a GP won’t see you (unless to refer you to physios) until you have been down the physio route. We refer ourselves to physio. 24 week waiting list when I went on it two and a half years ago.

Pain relief - there are other drugs than co-codamol. Chat to your surgery pharmacist (again in my area a group of four surgeries employs two part-time pharmacists) if there is one, other than that your own high street pharmacy. They might suggest a medication that you, in turn can mention to the GP.

Personally I’m on Butec patches (look it up) which are very good. The withdrawal symptoms are like coming off heroin though.

Sleep. Once we get to our age uninterrupted sleep is completely out of the question. I’ve various breathing techniques to help. Have you tried these?

[BenHall1 in reply to Happyrosie]

Hi Happyrosie,

I will reply tomorrow. Your comments raise many issues in my mind. Need to think things through a bit more.

One thing though ... how did you find out that your GP won't see u unless you have gone down the Physio route first ?

John

[Happyrosie in reply to BenHall1]

I shall try to elaborate. It’s been like this for years so I’m not sure how or when it started. We self-refer to physios (here it’s called a MSK partnership, for musculoskeletal) without approaching gp. It’s still NHS by the way and is based in the local hospitals. I assume if you go to gp he or she will tell you to go to them - unsure exactly. But this is how my family have done things for quite some time now. I remember many years ago my own gp mentioned it in passing.

For example. My husband had a left shoulder op about ten years ago and was told the other would need doing in the future. So about two years ago, when the right shoulder had become more painful (and yes I have to help him do a certain amount of dressing) he went straight to MSK, the physios insist on doing what they want to do before he can be moved on to the surgeon. The op was last Friday- but because of reasons outside anyone’s control was postponed till January.

This was our experience anyway.

[BenHall1 in reply to Happyrosie]

Hi HappyRosie,

Thanks for your comments. I have now re- read your comments including your latest – and indeed from the other contributors to my original post. Obviously if I go down the ‘complaint road’ at this stage it may be premature as …… all roads go through the Physio. However, my experience with Physio ( based on earlier problems with my right shoulder ) puts them at a very limited value – other than a part of a referral process. I think I can live with that but not with anything that involves exercises when my pain levels are already sky high ( and as I have said – my wife has to help me putting on a shirt and jacket as my range of movement is shot to pieces ).

Yes my surgery does employ a Pharmacist and I might have to go there next …. This damn pain has to be brought under control one way or another. Certainly, the CoCodomol 30/500 isn’t even touching it now. In fact what is happening now in the course of daily living because my left shoulder is so stuffed my right is doing extra work, ( right shoulder work PLUS left shoulder work ) and this is causing much more pain in the right shoulder than I’ve had since before my original cortisone injection on 1 April 2022.

Thanks for the tip off on the Butec patches …. what strength do you have 5mg, 10 mg ???? - do you have any side effects ( apart from withdrawal stuff ) from them, i.e. sleepiness, drowsiness, addictiveness etc. I’ll have a closer scrutiny on Dr. Google of these patches.

Agree with your comments on sleep have had these issues for decades ( I have spent 30 years driving buses on shift work, rotating through early, middle and late shifts ) and I’ve always blamed shift work. Now though it’s a pure and simple pain problem that wakes me up and causes the sleepless nights.

I have just phoned my surgery Pharmacist to discuss the Butec but no body is available, even for a call back ! No surprise there then!! My GP has her day off today so they have sent her an email outlining my request. Watch this space. If she honours me with a call back tomorrow or Monday I'll try and discuss with her the MSK partnership. There is something along those lines down here in Cornwall.

John

[Happyrosie]

I feel for you! Or at least my husband would. Yes, MSK put him through the exercise route for his shoulder, thus making it more painful than it was before.

As far as Butec is concerned, for me this was for arthritis exacerbated by the pills I was taking to prevent recurrence of cancer. We did spend a year trying different kinds of pain relief - my doc has an extra degree in pain relief - until he eventually put me on 5 to start with. Nausea for 6 hours the following day. No nausea or other symptoms since.

Then gradually over the years went up to 15. When I came off the cancer pills the arthritis eased quite a bit so I went down to 10 then 5. Cold turkey was very unpleasant so I went back on to 10 now I’m on 15 again. It takes the edge off and I take co-codamol during the night and I wake up. The surgery’s pharmacist was extremely helpful all through this.

Hope this is helpful

[MO1975]

Hi Ben.I'm so sorry you are having 'issues' with your Dr.

I did, and in the end, I did send in a formal complaint, so now on my records it says no contact with....! Maybe switching quacks is your only alternative.

I was told a 'Care Report' was going to be done... but hasn't. Maybe you could ask for that?

As for relief, I can help with that. I'm now prescribed 120mg of Dihydrocodine, 180mg of Nefopam and 1000mg of Naproxen daily. With the option of Diazapam if I need it. Duloxitine is a head pill- I call it my nutty pill, but it is asleep used for pain, and it really helps me in the mornings so I can then do my physio- taken different moves from different therapists over the years!

I also use 1200mg in strength of CBD OIL not the balm, and gently rub it in- it does work wonders but isn't cheap, don't forget to do a patch test first. I also uses supports and braces- I'm sure I have seen a shoulder support out there on interweb!

Last bur not least, if I know its gonna be a bad night I take Diazapam and also the CBD oil under my tongue. It helps to settle me. I hope some of this can/will help you

Mich x

[BenHall1 in reply to MO1975]

Thanks for your comments Mich,

Yesterday I did receive a telephone call from my surgery and we agreed on a suitable date for my GP to telephone me .... next Wednesday, 5 December. I am on her call list. Wow - totally awesome.

Oddly enough, last night I gave up sleeping in my bed and re arranged a set of cushions on a sofa bed in our lounge room. What I didn't fully realise what I'd done was to force myself to sleep on my back or at worst on my right side, and on a slant too. This meant that my left side - the side producing all the pain was not in contact with anything .... and I actually slept and when I did wake up my left side felt more comfortable than it had done for a while.

Many thanks,

John

[Runrig01]

Most surgeries have been instructed to follow the analgesic ladder and physio, before referring to orthopaedic Drs. GPS are unlikely to arrange an X-ray if you haven’t had a fall. They are not needed to confirm osteoarthritis, and do not show damage to soft tissue, like tendons and ligaments. Physio are best placed to assess what’s causing the pain, and refer you on to a rheumatologist or orthopaedic surgeon if needed. Steroid injections can actually result in damage or tears to tendon, so it may well be they would say No, if there is any doubt re tendons. Rotator cuff injuries five similar pain & restriction to movement as you describe, and physio is the best treatment for that.

Like someone else mentioned I use butec patches, as I have an inflammatory arthritis, as well as the osteoarthritis. It’s good in that you don’t get peaks and troughs so you sleep better. Amitriptyline is also good at easing the sharp pains, and lets you sleep better. Not sure if your surgery does EConsults where you bypass the receptionist, and you could use to request review of your analgesia.

[BenHall1 in reply to Runrig01]

Hi Runrig01

Thanks for your comments. I have read both your profile and of course your comments. Gosh, your profile reads like quite a drama, I’m sorry that you’ve had so much to contend with. Equally, your first two sentences fill me with despair ! They rather make me feel that I’m going to have a battle on my hands .... mainly because my case history is full of contradictions and my current GP has been at the heart of all of them since late 2018.

The first appearance of Osteoarthritis came in 2015 (aged 71) resulting in right knee replacement surgery in November 2015. My GP at the time made all the arrangements and got things sorted. Then he retired handing over to the woman who is now my GP. Forget that now, its all history and sorted.

By late 2018 I had XRay diagnosis of Osteoarthritis in the right and left shoulders. This very same GP performed the injection into the right shoulder on 1 April 2022. It is still holding good but has been troublesome of late as it has been doing much of the work of the left shoulder too. The original damage to the right shoulder ocurred when I fell off a bungalow roof in Australia some 25 to 30 years earlier. At the time I was warned that it would become arthritic in later life. So thats sorted.

In September 2020 Xrays confirmed early onset osteoarthritis ( same current GP ) in left shoulder. In early November 2023 I phoned my GP who shoved me off to the Practice Physio. Even more dramas. The day of my Physio Appointment, in the early hours I tripped over the cat, went flying left arm outstretched and smashed into a door jamb shoulder first. Phoned 111, got an instant email referral to our local hospital Minor Injuries Unit who did XRays which confirmed nothing broken.

Frankly, I can see no point in undertaken Physio exercises which will generate so much pain when currently I need my wife to put on my shirt and jacket for me because to bend my left arm to dress causes such amazing pain.

Its all a bit like playing pass the parcel at a Belfast Pub in the olden days !!!

My GP has already prescribed Amitriptyline and I found it caused unpleasant bouts of Diahorrea. I reported this to my said GP who commented that she hadn’t heard of that. It says very little for her skills as it is clearly stated on the bit of paper in the packet ... even says such incidents should be reported to a medical practioner. So against all this .... why would I not make a formal complaint to the various healthcare authorities and also my MP ! It is total NHS bungling. I would also add that this practice has already been subject of unfavourable Care Quality Commission reports. Unfortunately there are very few surgeries where I am - so alternatives are a bit scarce on the ground.

No such thing as EConsults with my surgery down here in dark age Cornwall.

Anyway it’s an exciting week coming up ... Physio on Tuesday, a telephone discussion with GP on Wednesday ... which will focus on Butec patches.

John

[Runrig01 in reply to BenHall1]

Yes unfortunately I’ve had quite a journey. I worked as an orthopaedic nurse for over 30yrs, but had to retire when I had a severe stroke at 52yrs old, due to an adrenal crisis.

When I’ve had steroid injections in my shoulders, it’s always settled pain for around a year. Unfortunately the slightest damage to joints, results in accelerated OA. The physios as part of the musculoskeletal team, are able to assess and refer you on to hospital specialists without needing the GP to consent. I hope things take a turn for the better for you. Hopefully they agree to you trying butec patches, and your pain improves, which will help you do your physio exercises. Take care 🤗

[Que27]

I get the pain you speak of. My hip was replaced but my right shoulder hurts constant. I get a cortisone shot every 3 months in the shoulder blade. Was told I might have more relief if I go to the hospital and get shot on top of shoulder but they need to take x rays to do that.I guess doesn't much matter because I have small rotator cuff tears along with Osteo. I do have tramadol I take when I can't stand the pain but it's not much help.

I feel that doctors don't much care about us older folks and figure we will be in pain of some kind so maybe we are just bitching more than normal. This is what our world has come to.... I'm sorry I have nothing more that can help... Just know you are not alone.

[BenHall1 in reply to Que27]

Hi Que27,

Thank you for your comments. I am quite convinced doctors don't care about older folk. I also don't think the healthcare system these days is designed to embrace the welfare of us "oldies" ... particularly those of us like me who, generally speaking, are mentally and physically fit enough to be able to still work and contribute a bit to society ( I drive double decker buses for a national bus company under contract to a major college part time 30 hours a week - except at the moment - too much pain - 😭😭).

I have already come across the attitude from the only major hospital close to where I live that said .... well at your age you should be sitting back and taking it easy. Of course, forgetting two things..... 1) by being physically active and mentally too I am helping to maintain my own welfare as well as helping the community. 2) the national government is encouraging people like me to return to the workforce (where they can) to help out with labour shortages in a range of industries. Needless to say I gave that hospital a kicking by reporting the whole incident to my MP and Secretary of State for Health..... playing the ageist card particularly. I could have reported the matter to PALS, but thats like getting the Police to investigate themselves. 😂😂

Tramadol is a drug I hadn't thought of. I have asked for Butec patches but if they refuse then I guess I can always request Tramadol.

Thank you again.

John

[Que27 in reply to BenHall1]

👍 hope all works out!

[BenHall1 in reply to Que27]

Thanks. I had my appointment with Physio who was quite amazed at the deterioration in the shoulder. She has referred me to our local MSK Interface Service. She has asked them to investigate pain, carry out Ultrasound, and if appropriate give me cortisone injection. Now all I have to do is keep enduring pain and wait for an appointment.

😱The next day my GP phoned and prescribed me 5mg Amitriptyline, which gave me Diahorrea - as it did 2 years or so earlier with the right shoulder. So she is now gonna give me a call on Tuesday to discuss another option. Meanwhile I've reverted to CoCodomol for pain relief. 😱😱