When the drugs don’t work

[D0n49]

Where to begin… my poor Mum had her first hip replacement in 2007, but it broke and she had a revision in 2008. Unfortunately she was in more pain than ever, and they were about to write the pain off as psychological but thankfully she got referred to an Orthopaedic Specialist hospital who discovered she had two different deep rooted infections.

After having her hip taken out, a spacer put in, and 6+ months of IV antibiotics administered daily via a pic line, she finally had a third revision in 2012. But remained in constant pain and has been advised the replacement is working it way loose.

Mum had a heart attack in 2017, in part I believe from the use of Ibuprofen which the Doctors knew she took to try and control the pain. However she is no longer allowed to take NSAIDs and was finally placed on pain controlling meds; slow release MST and Tramadol.

In addition to ongoing pain in her hip, she has pain in her opposite knee - because one leg ended up shorter than the other she walks with a roll, and now her knee needs replacing too. Arthritis is also causing her spine to curve, and more recently she has started to have pain in her shoulder from reliance on a crutch to walk for the last 15 years.

They won’t operate on her hip or knee, she is too high risk now. Various steroid injections have failed. The local pain management team conducted a couple of procedures on her knee using cryotherapy and radio therapy, but none have offered any relief.

The pain killers don’t work, and what little quality of life she has is rapidly deteriorating. I don’t know what to do or where to turn next. Health care professionals seem to think it’s acceptable to leave her in this state, but they do not see the pain in her eyes, the grimace with every move, how heartbroken she is she cannot garden (her one hobby and love) and the tears when she just can’t cope with the unfairness of the relentless pain everywhere.

I have reached out about acupuncture, but people are reluctant to treat her as she is on blood thinning meds. I have looked into CBD oil, but I worry about the possible interaction with the thyroxine she takes.

If you have got this far, I thank you for reading.

If you have any suggestions on what I can do to help my Mum, I thank you even more!!!

[piglette]

I had PRP for my knee and amazingly it seemed to work. This is a US report on PRP. I am not sure if you can get it on the NHS yet or not. I paid privately.

caringmedical.com/prolother....

[D0n49 in reply to piglette]

Thank you piglette. Do you mind me asking where you got this done please?

[piglette in reply to D0n49]

A GP close by does it privately.

[D0n49]

Thank you so much 🙏🏻 How many sessions did you have before you felt the benefits please piglette?

[katieoxo60 in reply to D0n49]

Hi again in respect of these injections they are not used in general for arthritis in UK . I had them after my knee op and they worked quite quickly lasting about 2months. They are usually a private treatment and like any other treatment I have been advised they do not work for all, or for all types of arthritic pain. However they are being tested here in England for future NHS use as a pilot project in some areas. Worth investigating for anyone in bad pain like your mum.

[D0n49 in reply to katieoxo60]

Thank you Katie!

[MarmiteLover1 in reply to katieoxo60]

Worth a try. I was told not useful for my polyarthritis so did tapered course of prednisolone instead.

[Lebby2010]

I’m a great believer in homeopathy, it doesn’t work overnight, like pain killers, but take mum to a reputable homeopath. I’ve used it for years, for myself and dogs, via a homeopathic vet, and the results are amazing. After all, animals just get better, they can’t say it’s rubbish!

[D0n49 in reply to Lebby2010]

Thank you Lebby, with do some investigating 😀

[Cup-cake7 in reply to Lebby2010]

Me too I brought my 3 up with homeopathy not bragging but I didn't use an antibiotic at all as decided they would be more effective if a real emergency arose which thankfully didn't. I had my first at 45! Burst tooth absess

It's just fining a good practitioner mine retired

[Lebby2010 in reply to Cup-cake7]

I agree wholeheartedly, too much reliance is put on pharmaceutical products and after all a lot of these things are based on plants. When I was having chemotherapy they tried to tell me it was made from plants! I said, I dot think so, as Bug Pharma can’t patent plants and they wouldn’t make mega bucks. Cancer is a multi billion income. I’ve just ordered the stinging nettle from a homeopathic company to see how that works. All my dogs have it regularly. I had a Guinea pig with a really sore eye. My original vet gave her injections, cream etc and it never healed. Went to hom vet and he gave me tiny pills to put in water and syringe them in her mouth. Within a week her eye was like new.

[Cup-cake7 in reply to Lebby2010]

Sorry what are nettles for again🤔

[Lebby2010 in reply to Cup-cake7]

Arthritis. It was a lady on here at the start of the thread, said she got stung on her foot and the pain went away

[Cup-cake7 in reply to Lebby2010]

👍il buy some do you think tabs more effective than tea

[Lebby2010 in reply to Cup-cake7]

I’m not an expert, but my homeopath always gave me tablets. If you want stronger homeopathy go to the homeoforce website. I usually take 200 upwards up to 1M then you’re not faffing every 2 hours!! 🤣🤣

[Cup-cake7 in reply to Lebby2010]

Wow. Bit scary lol. I meant nettle tabs or tea haha

[Lebby2010 in reply to Cup-cake7]

Yes, as I said, I think tablets are better than the tea, get the 1M if you can, but you’d need to buy from a proper homeopathic dispenser

[Cup-cake7 in reply to Lebby2010]

O sorry. I didn't know these were homeopathic!

I buy via Helios. If you have a good link pls say. Are you able to diagnose

[Lebby2010 in reply to Cup-cake7]

Yes, I buy from them too. Excellent service. No, it’s only from when I went to my friend who is a homeopath and bits I’ve picked up along the way. I’m no expert by any means, but remedies are very versatile. I swear by arnica 1M for everything and nux vomica is my other staple remedy. Anything else I research and try out.

[Cup-cake7 in reply to Lebby2010]

Is the high arnica worth a go after operation?

I think I was a nux vom too

How long to you think ok to keep in air tight box

They used to say years

[Lebby2010 in reply to Cup-cake7]

Yes, I’m my opinion although I’m not an expert. I remember years ago I was on a training course, and there was a farmers wife with me, and she told me a few years ago her working collie was run over. The vet (as is the norm) said the shock would kill him and best to put him to sleep. The farmers wife said “You leave the shock to me, and I’ll get him to you so you can put him back together’. She gave the dog 1M arnica every hour, (she’s a registered homeopath) and the dog was fine. The vet couldn’t believe how he suffered no trauma, and went in to live for a few more years. Now then, animals can’t say it’s rubbish! My pills are usually in bottles and I’ve had them for years the secret is not to touch them and have them 20 mins before eating or drinking and allow another 20 mins after. Animals apparently don’t need this!

[Cup-cake7 in reply to Lebby2010]

That's great I've never touched no minty

[Cup-cake7 in reply to Lebby2010]

Aconite used to be before arnica for shock

[MarmiteLover1 in reply to Cup-cake7]

I'm sure you are right. A pal's mum consulted one who told her she didn't need blood pressure medication so she came off it and sometime later had a stroke. It doesn't help when some abandon evidence-based medicine for something unregulated and not trialled. Certainly there's a balance to be struck.

[MarmiteLover1 in reply to Lebby2010]

Unfortunately homeopathy isn't evidenced-based but costs a lot of money for something which might be placebo effect. Animals may get better, but may have done so anyway. They also don't worry as humans do, which often speeds recovery.

[FattieBabs]

no answers but your mother has my deepest sympathy. I’m just going through my second hip op so hope he matched my legs!

Pain management is so important and this is affecting your mothers quality of life so much. When I had extreme pain from the first hip I did try cannabis at night and it did help a bit but not sure it works for everyone.

I’m so sorry.

[D0n49 in reply to FattieBabs]

Thanks for reaching out Babs! Wishing you big get well wishes for your second op 🍀

[FattieBabs in reply to D0n49]

Hi. Thanks. This one is going so much better than the first. Less buttock pain and knots , hip not so stiff, no accident at the hospital this time so muscles recovering normally. After icing for three weeks regularly bruising almost gone… I am able to bridge far better than before and, to my amazement, made the concious decision to come off morphine at night six days after the op.

I realise how lucky I am as have the first op to refer to.

One suggestion for your mother, have you thought about hiring an ice machine for a few months. I used one gif the first 10 days and it was a godsend. I now have packs that strap around my hip or knee or I put one against my lower back at night. They have been a revelation.

[MarmiteLover1 in reply to FattieBabs]

It's illegal in UK, sadly. CBD is a derivative but unregulated here, and expensive to boot.

[pinkieponky]

Hi, I felt I had to comment on this. I don't know the dosage of morphine your mum is on but after a while the dose stops working and you have to tirate up to a higher dose. This is what happened to me. I reached the highest dose and pain management put me on oxycontin with oxycodone for breakthrough pain. This drug is stronger than morphine and for me has worked much better than morphine. Maybe your mum could be referred back to the pain clinic as there are other options still available to her. You must be her advocate, it seems that you have to fight for everything now with the NHS. Good luck.

[D0n49 in reply to pinkieponky]

Thank you pinkieponky. She is only on 5mg once every 12 hours. I have reached back to GP to ask she be referred again, and enquired whether this could be increased.

Out of interest, what was you max dosage please?

[pinkieponky in reply to D0n49]

Hi again,5mg is a tiny dose, especially if she has been taking that amount for a while. The maximum dose I took was 120mg per day slow release with breakthrough morphine on top. Some days I would be taking 160mg per day. It eventually stops working. Hope this helps, Tracey.

[D0n49 in reply to pinkieponky]

Thank you Tracey. She is so paranoid about getting addicted, she try hard not to take her full allowance, but maybe this will help me convince her there is more help to be had 😀

[pinkieponky in reply to D0n49]

Hello again, please tell your mum she is in control of her pain and medication. Once she gets the pain under better control her life will improve. Like me, it will more than likely never return to normal but with the help of drugs she may have a better quality of life. I keep my dose as low as I can but at times I have to take more, with my doctors consent, the days of feeling guilty about it far outweigh the benefits. I hope your mum considers the better life she could have and decides to revisit her gp, all the best to you both, Tracey

[Wooodsie]

Poor mum, and poor you. Sorry I can't help, but I wanted you to know I care

[D0n49 in reply to Wooodsie]

That is so sweet, thank you 🙏

[katieoxo60]

I have read your plight in full, has your mum been offered any patches like they give to cancer patient? they are more powerful for pain. But it sounds like my situation where you cannot take anti inflammatory drugs, I had the new platelet injection but I think the process would be too difficult once severe pain as set in. Warmth of any sort helps. I take the slow release like your mum, sadly that seems to be the only option for your GP. It looks like this is a case of bad luck for your mum, plus not acting quickly enough once it was obvious something was wrong. I have a similar problem of one leg a different length to other following knee replacement so can emphasis with your mums story. I would definitely approach the Dr about patches or stronger opiods. But all else aside whiskey is a brilliant pain killer and your mum as nothing to loose now but might get some pain relief from a hot toddy. Multi joint arthritis is no fun I have heard of people taking illegal drugs just for pain relief. Wish I could be of more help to you but as a sufferer who has tried many options and as yet not found an answer I truely understand what you are going through they say waterbeds are good and I have a massage/heat chair and bed. Saunas have a part to play and you can get small ones fitted at home these days but it sounds like your mum is looking for a way out and there isn't one. Will be thinking of you , take care

[MarmiteLover1 in reply to katieoxo60]

Whisky used to be given before amputation before anaesthetics were develope. Yup. It works.

[katieoxo60 in reply to MarmiteLover1]

That is a tried and tested relief for arthritic pain but short lived like many others. But a toddy at bedtime helps with sleep . Take care

[MarmiteLover1 in reply to katieoxo60]

You're quite right. It seems such a shame. If I end up with chronic pain I think I'll take a one-way ticket to that lovely European country which was neutral during WW2.

[D0n49]

Oh Katie, I am so sorry you are in pain too 🤗

Am really grateful, you always take the time to write such helpful and thoughtful posts!

Definitely some great ideas, unfortunately she has an allergy to Elastoplast/plasters, but maybe they could do adhesive free patches? Not sure about saunas though, the poor woman also suffers from THE most horrendous heat sweats/hot flushes on top of everything else 🥵

Its enough to make doubt that things like karma exist 😔

[katieoxo60 in reply to D0n49]

Well looks like your friend will have to try other options, However might be worth asking if there are any patches with different adhesive for those who are allergic . My daughter is allergic to plasters so she uses other options like sellotape with lint but that's no good with heat patches and pain patches, or those patches to stop smoking. I'll have a search and see if I can find any other solutions. I appreciate the problems I have the same with many tablets. Allergies are not taken seriously in the research field or NHS treatment. I get hot flushes but they pass off quickly and its not menopause, mine started when given new drugs. for other things . Spend more time treating the side effects.

[pinkieponky]

Just seen your reply to Katie, if it's not menopausal hot flushes. Pain can cause horrific sweating, regards Tracey

[katieoxo60 in reply to pinkieponky]

Thank you for reply much appreciated. Pain also reduces the power in the limbs that are effected.

[dinahdough]

How about a TENS machine? I don't know how effective it would be for really bad pain but the pulsing of the machine can be quite soothing and, for me anyway, provides a distraction from pain. There's some info about them on the Versus Arthritis website.

versusarthritis.org/about-a...

[D0n49 in reply to dinahdough]

Thank you dinahdough 😃 I have bought one and it's actually sitting unopened in my room. It was a middle of the night purchase when I wake and start googling/ worrying what to do, but per usual only after did I read online about who cannot use it - like with other products there is always a caveat about heart patients, so had wanted to check with the Doctor before giving it to her?!?!

[Cup-cake7]

I'm so sorry. Chronic pain is soul destroying. If you can locate a Mctimony chiropractor please talk to them. It's very gentle and far reaching. They start at your ears! Works down and get the whole body aligned to its best, with mentioning spine especially, the body works in unison

If in NW please message me I'm getting proper help now after hip surgery left tilting pelvis 5cms! It's levelling up after hobbling around for months. X

[Cup-cake7 in reply to Cup-cake7]

Ps. And importantly taking pressure of f/aligning the spine which got affected by the bad posture it brought, even my neck was aching but ok now

🥰Hoping the alternatives help overall , (how long to you need to pause blood thinners to have accupuncture is it worth consideration )?

[D0n49 in reply to Cup-cake7]

Thanks Jeppy! We are in the south, but something I will look into. Just to find a professional that seems to care, I think she could respond really well - just need to find one ☹️

[Cup-cake7 in reply to D0n49]

Just been to Mctimoney she took pic of me as I am standing straight !!! I usually lean to side without knowing. Clever stuff 2 sessions.

[Cup-cake7 in reply to D0n49]

Said to look at this link to find one if you decide to have a go

I'm sure there will be some benefit

mca-chiropractic.org.

(Unsure if the last . is needed? Lol)

Pls let us know if mum gets positive improvements anywhere

It helps moral so much if you find an understanding therapist who knows their stuff

Good luck

[Cup-cake7 in reply to D0n49]

Def! If chat and ask few direct questions I find it helps

...As soon as mine said she's lost count of how many tilting pelvises she's corrected I made appointment. My muscles are so tense it seems

Helpful also to be shown what's going on on her skeleton

With leg discrepancy it's not maybe the biological length it's if it's hiked up by up -tilt in pelvis

Mine measure the same from hip bone to ankle bone

But the pelvis tilt up is hiking leg up 2 inches which makes it a hobbling thing at times surgeon said 'just walk' it will relax back

However I now can see it's not that straightforward as the joints and muscles all need tweaking as I also had this ten yrs before I got the op so big compensations going on

Mctimoney I have my money on literally it's about £50 btw you shouldn't have to pay but we have little Choice nhs physio no help at all sadly had me trying to do impossible muscle strengthening exercises excruciating too mctimoney explain this is wrong as you can't expect muscle strength to improve as muscles are lead by joints! So first thing is to align ad secure the big and small joints which makes sense really - then you can exercise with results

To think I was doing those exercises for no gain in a lot of pain is concerning

[Cup-cake7 in reply to D0n49]

Ps. Mctimoney said my muscles very very tight. It's all the compensating that went on and not exercising enough ....

She said massage will really help - Swedish or sports good if can take the firm touch! However I got a Thai massage she decides how much pressure - wow and OOOCH! No pain no gain releasing many knots getting circulation going through

result excellent so much looser and walking better. Il need a few then maybe one each month to maintain. She could tell my hands aren't 'arthritic' as I thought but very knotty and fingers needed pulling! Said if you don't do this it can get arthritic which makes sense I guess She worked all around hip too very firmly

Il go between mctimony & massage

Thinking maybe the Revitive for circulation? All expenses but decided I'd rather try than not

[MarmiteLover1 in reply to Cup-cake7]

Deep tissue massage! Works for me. Once a week by a professional.

[MarmiteLover1 in reply to Cup-cake7]

Yes, exercise vital. I'm doing all the exercises I can find including the Escape Pain programme. I'm doing the hand exercises every time I'm sitting watching telly or having a cuppa.

[MarmiteLover1 in reply to Cup-cake7]

Oh, yes! Also, I have a deep tissue massage at a branch of Bodyset every week which has improved my mobility enormously. NHS doesn't offer it so it's a lot of money out, mind you.

[Shaky46]

I had a total knee replacement about 12 years ago that left me in even more pain than before the op. Since then I have had two revisions and the pain has now become so bad that at times I can barely stand or walk. The surgeons say there is nothing more that they can do surgically. I've now been on high dosages of morphine plus just about every other pain relief medication. None seem to have any benefit and the pain just gets worse and worse. Recently I read about a treatment called Radio Frequency Ablation. Before this can be carried out I must first have three nerve deadening injections. If these improve matters the doctor will then proceed with RFA. It was not until I caused a great deal of fuss and complained that I got to see a specialist pain management consultant - though I was forced to go privately for the first consultation . I'm due to have the injections on Jan.11th at an NHS hospital - otherwise it may never have happened as NOBODY has ever mentioned this treatment to me before. If this treatment fails I really don't know what I'll do as my life is now at a virtual standstill. To make matters even worse all the pain killers have completely messed up my stomach and I regularly suffer from constipation, nausea , followed by diarrhoea. The TKR is the worse decision I ever made.