pain relief

[snoopy29]

Hi i am waiting to been diagnosed but wondered if there are any stronger painkillers that you could recommend, that maybe helped i am currently on co-codamol 8x times a day but feel i am still in alot of pain all the time,

many thanks

[suzy1959]

If your pain is from PMR, then no other painkillers will work, only Prednisolone. The fact that they are not working is another possible diagnostic.

[snoopy29 in reply to suzy1959]

Thanks that's interesting

[MrsNails]

Hi, just checking you say you are on “Co-Codamol 8x times a day”?

Do you mean 8 a day or 8xtimes a day as you have written?.........

[snoopy29 in reply to MrsNails]

Hi 2 tablets 4 times a day

[MrsNails in reply to snoopy29]

You had me worried there for a minute! Yes, your GP can prescribe other pain meds but what is the delay in starting Prednisolone?

Paracetamol/Codeine per se won’t help the stiffness or pain of PMR as most of us have discovered, it may ease other OA pain or general pain but it’s the Pred that waves the magic wand!

Are they waiting on blood results?

Kind regards

MrsN

[snoopy29 in reply to MrsNails]

Hi I have had bloods done and on the basis of the results she referred me to rhumatology but still waiting on app, getting my bloods done again on mon , can a gp prescribe prednisone

[MrsNails in reply to snoopy29]

Oh yes, unless you are out of the what Doctors perceive as ‘Normal Parameters’ your GP can treat you.

I wasn’t, as they considered me too young! Who knows what the waiting times are like at the moment & l’ve just had my Follow Up changed to a Telephone Consultation.....

After they’ve checked your bloods again on Monday, see what they suggest in the meantime as it’s awful to be in pain like this & GP could trial you on it to see if it improves the pain in the meantime.....

If you know where you have been referred it’s worth ringing up & finding out what the Waiting Time is like. Personally, l’d ring the Secretary to find out & let them know you are available at short notice for a cancellation.

Good Luck

MrsN

[snoopy29 in reply to MrsNails]

Thank you for the info I am only 49 so they may think to young , nice to be to young for something 🤣

[MrsNails in reply to snoopy29]

Yes, 50 is now the Magical Age! As we sometimes say, unfortunately PMR doesn’t know how old you are 😉 see what the GP says next week.

[PMRpro Ambassador in reply to snoopy29]

And NICE has "over 40" in its rubrics - probably a typo but it is a reasonable lower age limit!

[Portobello in reply to snoopy29]

Despite a raft of blood tests my GP wouldn't start me on steroids till I'd had a gastroscopy and colonoscopy to check for a bleed because I was so anaemic! So I had to wait 4 weeks in agony. No painkillers helped, not even oramorph. Hopefully you'll get some Pred soon. In the meantime I sympathise.

[PMRpro Ambassador]

I certainly never found anything that did more than take the edge off the PMR pain. I had PMR without pred for 5 years so had to live with the pain - my blood tests were all "in normal range" so I couldn't have anything wrong!

Warmth helped - as long as I was warm I could roll out of bed and manage to get clothes on. A hot shower also helped. Mon-Fri I went to the gym to a warm pool to do aquafit and after that the pain was a lot better and I was less stiff - I put it down to increased blood flow to the muscles, same as with warmth and a glass of wine in the evening (that was probably the most effective!). Before the gym I put my swimsuit on straight from bed, joggers and a sloppy t-shirt/sweater. If the pool was cool for any reason I didn't do the class, I went to the sauna or steam room.

[snoopy29]

I am liking the red wine idea , 🤣 I find the hot shower hitting my shoulders in the morning does help and up until now have been using bio freeze but will try heat a d see how that is , thank you everyone

[TheMoaningViolet]

Hi snoopy29, I hope you get diagnosis and appropriate treatment soon.

In early days before my diagnosis, I got quite a lot of relief from taking Naproxen which my GP prescribed (together with Omeprazole, a PPI to protect my stomach). This is a prescription only drug and not to be taken lightly, but in my case, while it was not as good as Prednisolone which completely eliminated all my symptoms, it allowed me to go into work and even travel to France for a work trip involving several hours of walking daily for 3 days.

Usually, my symptoms were getting better as the day progressed, so by 5pm I felt almost normal, so I only took Naproxen 2 (maximum 3) times per day (one at dinner time to help me sleep) even tough I was told I can take it up to 4 times per day if required.

When I had knee surgery I took Dihydrocodeine for a couple of days and could not tolerate it at all. I was nauseous, dizzy and very sleepy all the time (with hideous dreams); I was like a drug addict (but not in a good way). So, this is one drug I would never try again, I managed all of my post-surgery pain with Paracetamol.

[snoopy29 in reply to TheMoaningViolet]

thanks for the information, i feel alot more in control of just knowing what questions to ask the gp now , knowledge is power so they say.

[MrsNails in reply to TheMoaningViolet]

Ah, Dihydrocodiene!

The little elephant 🐘 🐘 🐘 tablets! 🤪

[TheMoaningViolet in reply to MrsNails]

A horrible beast!

[Hidden in reply to TheMoaningViolet]

Paracetemol is a great drug, it just needs time to accumulate in your system, plus for most people it does not cause nausea. You can also double up with 400mg of ibuprofen 4 times at day. Took the edge off what currently requires 90 prednisilone.

[TheMoaningViolet in reply to Hidden]

Yes, in the hospital where I had the surgery they used paracetamol as a baseline pain treatment with other things on top as required. They also offered me some when I was giving birth. How I laughed! 😜

[Toods]

Like you I am waiting for a firm diagnosis and the wait has seemed endless!! My blood results took 4 weeks to come back and it is now over 2 months since I rang the doctor (who I have not seen face to face) and over 5 months since the pain started. However, from finally being referred to a rheumatologist to getting a face to face appointment at hospital has taken only 2 weeks and I am being seen on Monday. Meanwhile, my GP has put me on Etoricoxib 90mg plus Omeprazole. The pain is still always there, but lessened.... I cannot take anything codeine as it makes me nauseous. Good luck with your referral, and try ringing the hospital for waiting times. I get the impression a lot of people are choosing to avoid hospitals at the moment and so surprisingly I was able to get an appointment quickly when I rang....

[snoopy29]

Thanks it does take ages , phoned the hospital yesterday and left a voicemail (close early on a Friday) , it's very frustrating isn't it as this pain is with you every day , take care and good luck on monday

[Toods in reply to snoopy29]

Thanks! You too... Just can't wait to get a diagnosis. At the moment I can't help feeling that people feel I am making a fuss or being a hyperchondriac as it's a condition they don't understand, and these terrible pains and the stiffness are hard to explain. Also, some days are better than others, and some times in the day you can seem ok. As I haven't been formally diagnosed it's hard.... Hoping for some answers tomorrow. Hope you get through on the phone. This forum is a godsend.

[snoopy29 in reply to Toods]

totally agree and have you had your results yet ? I went for my bloods on mon with the nurse and completely broke down so the surgery phoned the hopsital and got the rhumatology dept to confirm my date which is 1st sept thank god, people who meet me havent heard of the condition and when you mention anything arthritis they say that comes with age and its really frustrating as it doesnt, try seeing me at 3 in the morning trying to turn over in bed , my gran can do a better job @ 91.

Although you dont want to have this illnes getting it properly diagnosed will be good as you know who your enemy is.

Good luck and let me know how you get on

[Toods in reply to snoopy29]

I would appear to be a conundrum apparently! I could have 1 of 3 things but he seems to be veering towards ankylosing spondylitis due to my medical history (though my age questions this it would seem 😳) I have to have an MRI then see him again.... just hoping the wait isn't too long as the pain is terrible and I just want to get some appropriate treatment for whatever they want to call it!! My mother is 90 and I am more infirm than her! Good luck with your appointment.... Let me know. 🤗

[PMRpro Ambassador in reply to Toods]

Men tend to develop it and be diagnosed at a younger age - women often seem to be older and 5% of all patients are over 45 before it is diagnosed. Which probably begs the question - how often is a woman complaining of low back pain dismissed by the GP? They have pain earlier but are never investigated,

It is different: "As an initial manifestation, the patients with LOAS more often presented cervical pain (40.0% vs. 18.8%, p=0.005), shoulder pain (30.0% vs. 6.6%, p<0.001), lower extremity arthritis (56.7% vs. 36.5%, p=0.027), and the anterior chest wall pain (30.0 % vs. 6.6%, p<0.001) than AOAS. "

acrabstracts.org/abstract/l...

[Loyd]

Please believe me painkillers do nothing for PMG. Ask for an immediate diagnostic dose of 15mg pred. If you are miraculously ‘cured’ in 48 hours then welcome to the club. Wish you the best.

[PMRpro Ambassador in reply to Loyd]

It MAY take more than 15mg and it MAY take more than 48 hours!

[Hidden in reply to PMRpro]

So right and we are all different. There also great risks in being dispensed a powerful drug inappropriately and in the case of prednisilone it might mask the symptoms of something more sinister. I was convinced I had sinusitis, how wrong was I. Thankfully i am being treated appropriately for a condition which is 90% certain. Biopsy and mri Friday; the latter to confirm an alternative.

[rosie_jones]

Hello Snoopy 29

I too had a long wait - 4 months in fact - before diagnosis, by which time the pain was so bad I didn't want to fall asleep because I knew that when I woke up I would be in agony and the ritual of ice packs and lots of cups of tea would begin. (Painkillers didn't help, as people have said.) I eventually took my health care into my own hands and made an appointment privately with a rheumatologist - at which point made GP said that she could do a trial with prednisolone - I think you can take them for 3 weeks without having to go through the long taper to stop them. So why hadn't she tried this before?!!!

The rheumatologist prescribed prednisolone at 15 mg immediately and the relief was immediate - not complete, so she upped it to 20 mg, at which I would say the relief was 90%.

Would it be worth asking your GP to try this? It does after all help in terms of diagnosis.

Good luck - you have my every sympathy.

[snoopy29 in reply to rosie_jones]

Thank you for your reply , I dread going to bed at night as well as I cant even turn over without pain , could use a hoist 🤣🤣 my symptoms sound like pmr so will definitely be asking gp for trial of steroids ,thank you

[Loopy65]

Hi

I’m 54 and my GP put me on Pred straight away .. said it was a trial and if it worked it’s Polymyalgia if it doesn’t she’d think again.

I would say it’s important to have first bloods done pre-Pred but you’ve had those done already. I know that I’d not have been able to live with the pain for the month it took for my Rheumy appointment and that was pre-Covid!

You can get stronger painkillers but, as others have said, they wont really touch the Polymyalgia ‘pain’.

Hope you can get something sorted soon and welcome here even though sorry you have to have to be here!

[snoopy29 in reply to Loopy65]

Thanks I have found this page so helpful and yes I wish I wasn't here but its good to know I am not alone and if I have any questions I can ask them on here 🙂

[Hidden]

8 x 500/8 I.e 2 times a day rather than 8 x doses? Codeine makes some of us ill and is actually well known for causing headaches. You might want to ask your GP or even pharmacist whether taking a mixture of ibuprofen and paracetemol is worth trying. I have just been quite unwell and was told to take 15mg codeine, 2 x 500 Mg paracetemol and 400 Mg ibuprofen 4 times a day. Unless you really like codeine, try an alternative. You may and I stress may, might find it better.

[PMRfacebook]

hi I sympathise with your pain. my gp wouldn't prescribe anything until I'd seen a rheumatologist. in the end I paid 200 and saw a private rheumatologist-wuthun 3 days - he got the gp to prescribe steroids straightaway- dont think I could have gone on any longer - physically or mentally so whilst I am against private medicine per se it was the best 200 I ever spent ! take care

[snoopy29 in reply to PMRfacebook]

Thank you , have looked into private but it looks pricey but maybe worth a phone call , hope you feel ok now 🙂

[Amkoffee]

Suzi1959 is correct there is no analgesic pain medication that will help the pain. However I have found that Excedrin Migraine which contains aspirin helps the inflammation and helps the pain. This is by no means going to be enough but until you can get on prednisone it maybe the only thing you have. I can no longer take prednisone so this is my only option. I have found that it keeps my sed rate at around 40 instead of 75.

[snoopy29]

Thank you for the information 🙂