Pain relief tips/ideas

[Devils_Advocate]

Hi,

I have endometriosis meaning I am in severe pain (I've had 4 surgeries for it)

Separate to that I suffer migraines on and off, as well as back pain due to previous back surgery and disc issues.

I also have tendinopathy in my shoulder which I have had for about 6 months. I now have pain that is radiating into my neck and up my head - I assume linked to this.

I think that has been the straw that has broke the camels back. I am in constant uncontrolled pain, and I am exhausted.

My doctor prescribes codeine which really has little effect on the pain. It is also an absolute faff to get it as I have to go in, in person to order it every few weeks which I often forget to do.

Has anyone used anything remotely helpful for pain? I use tens, hot water bottles etc. I am allergic to anti inflammatories and hated gabapetin when I was on it before my back surgery.

I am in quite a senior position at work, and have children to look after (often on my own as my husband works abroad) so I also can't be away with the fairies either.

Thanks

D X

[BenHall1]

Hiya D,

Firstly, I do not jhave your diagnosis ... in fact I have no diagnosis per se, just guesswork based on old X-Rays ! but I'm in pain much of the day. That said, the pain I have has some similarities with your issues. I'm now aged 80, and normally a pretty active 80, having just retired from a 32 year long bus driving career in July 2024.

I had shoulder pain in right shoulder which resulted in numbness down right arm and pain in the right hand, thumb and first two fingers. On 1 April 2022 my GP gave me a steroid injection which amazingly has given me much longer term relief than I could have imagined. Pretty much settled. Right shoulder problems originated around 20 to 25 years ago when I fell off a bungalow room spearing my right shoulder into a timber deck.

That said, I had right shoulder X-Ray in December 2018 and left shoulder X-Ray in Sept 2020. - so its all pretty dated. The 2018 X-Ray also showed issues with Cervical spine at C3/C4 and also different issues at C5 to C7.

So, now to today. In 2020 my left shoulder was diagnosed with degenerative changes in both A.C. Joint and Glenohumeral joint. These have now significantly worsened and now I have varying degrees of ongoing daily pain in left shoulder. This shoots across to the right and creates again numbnesss in right arm and pain again in right hand, along with stiffness in Cervical Spine.

My surgery and my GP are not particularly good value. They have prescribed different medication for pain control, Amitriptyline and at a different time and date Gabapentin however both these gave me quite dramatic diahorrea so I told my GP I'd stay with CoCodomol 30/500 which I'd been on many years earlier.

I've never been offered an MRI. I see my GP on 6 Dec 2024 and no doubt there will be much gnashing of teeth.... I'll be asking for an MRI of left shoulder and cervical spine in an attempt to see prescisely what gremlins are at play and get proper treatment.

I take Warfarin for a cardiac condition so too many anti-inflammatories are not advised. I have a TENS machine with poor or little effect and when I first get up in the morning I use a 'U' shaped hot water bottleplaced over my shoulders, both shoulders which I do find very, very helpful. Its a great way to start my day with a PLUS BOOST 😀 Sometimes during the day too but I understand you could not be doing that with your work.

My CoCodomol 30/500 is good for me as there is no drowsiness ( or feeling off with the fairies ), even took it at times when I was bus driving. It comes in packs of 100. The maximum dose per day recommended is 8 tablets in any 24 hours. I start my day with 2 with breakfast and take 2 at night when going to bed which helps at night. That gives me another 4 to take at 6 hour intervals during the day. You may wish to get on NHS website and look up this drug for side effects.

Unfortunately, I am a side sleeper so I'm always being woken at night usually around 1 or 2 am in pain, partcularly the right arm and hand. I usually go to sleep on my right side but wake in pain and lo and behold I'm on my left side.

Anyway, I am sorry for the length of this reply to you but I hope it may give you some bright ideas ( or any ideas) for you to consider.

John

[Devils_Advocate in reply to BenHall1]

Sorry to hear you are also having issues, and I hope you get a diagnosis/resolution. I find co codomol not particularly helpful but glad it is useful for you. I am living with hot water bottles on me - my staff are used to it hah.

D x

[cyberbarn]

Hi, sorry to hear you are in such pain. There is no where near enough support or understanding for endometriosis.

Have you seen the pain clinic yet? You should have been referred to them. But for your neck have you seen a physio? It could be that getting your neck sorted out might help everything else calm down.

Years ago I had a neck problem, well, still do, that manifested in shoulder, elbow and hand pain. The NHS physio was useless so I went to an osteopath and he sorted it out in two sessions.

As for the codeine, there are broadly three types of people, those for whom codeine works fine, those for who it doesn't work, and those who just go off with the faeries even with the lowest doses. It might be that codeine isn't a good match for you, but a specialist in the pain clinic might be able to sort that out for you.

Some people find heat works, and for my shoulder I find rest (rest? What's that!) heat and topical ibuprofen works. I can't take oral NSAIDs but I can use the gel as long as I don't over do it.

I hope you can find some combination that works for you.

[Devils_Advocate in reply to cyberbarn]

Hi,

Thanks for your reply. Endo care is appalling.

I have been having physio for months with no joy but will try an osteopath.

I went to the pain clinic (twice) once for my endo and once for my back (when they thought it was in my head rather than a severe herniation that's left me with permanent nerve damage). Both times they have told me to practice breathing and mindfulness. I find it very unhelpful. I assumed it would be a medication review, injections may be discussed etc not told to stop being hysterical essentially.

Honestly, I can't rest generally. I have two fairly young children and a husband who spends a lot of time in the USA. My job is very stressful and I am on call on and off (I love my job just not the most forgiving if you are ill). I also find resting unbearable atm as sitting with my pain makes me want to operate on myself with a fork hah.

I will ask my doctors if I can have the cream. I am face swelling allergic to naproxen so not sure if it will be tolerable. Hot water bottles for the win though!

D z

[AML80]

Have you been referred to a Pain Clinic. I have just had injections to kill the nerves in my back which stops the pain. If this is not for you they can advise on medication.

[Devils_Advocate in reply to AML80]

Thanks for your reply I have been twice once for my back and once for my endo. I was told to practice mindfulness and breathing - it was enraging.

I have no idea why I haven't had a medication review. I'm going to talk to my hopeless GP tomorrow.

He just keeps trying to put me on antidepressants which I do not need or want to try.

D x

[PainConcernProjects Partner Community Champion Pain Concern]

Hi Devils_Adovoate

I am sorry that you are struggling with pain. It is particularly tough when there are various conditions going on.

I also have experience of endometriosis and multiple surgeries. Have you seen the information and support services Endometriosis UK provide endometriosis-uk.org/ ?

You may like to consider joining one of our Pain Education sessions, which look at understanding pain and self-management techniques that can help etc. To book please click here: eventbrite.co.uk/o/pain-con...

We also have various resources on our website such as our 'manage your pain' leaflet, which can be viewed here painconcern.org.uk/product/...

-Pain Concern Admin