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PMRGCAuk
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Follow up re alternative pain relief and sciatica

I have put a follow up post on my original post but thought I'd start another so that you can all see it.

Thanks to everyone for all the helpful advice.

I went to the docs this morning. After examination and questions she believes it's sciatica. Told her I'd tried hot and cold packs, paracetamol, ibuprofen gel and gentle physio exercises but nothing is working. She has prescribed 500mg Naproxen twice a day with 20mg Emozul (to protect stomach - I can't usually tolerate these things but I've not tried this one so fingers crossed) . I've never had Naproxen before, so hope there aren't any side effects.

I'll have to take the tablets as the pain is continuous whether I'm standing, sitting or lying down 😱 So I need something. I'm just pacing about 🤷🏻‍♀️

Since I sent this post I've check the leaflet in Naproxen and it said not to take with steroids! I checked this with the doc this morning and was told that as long as I take the PPIs it's ok 😟.

Well, I'd taken them this morning anyway - pain still as bad but maybe I'll have to take my next dose later to see any effect. 🤞

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Thanks for this - always good to start a new thread otherwise it gets lost!

The only experience I’ve had with Naproxen is post knee and hip operation - so only short term. No problems, only the usual constipation associated with pain killers! But have to say wasn’t on Pred at the time!

Hope it works for you.

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Thank you. To add to it - my left leg just let me down (3rd time today - I told doc) and I went crashing to the floor. Head and arms are bit sore but at least no blood! Doc said this can happen with sciatica. Ahhhhh

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Sorry to hear about your misery. Are you sure it is not PMr. I get a lot of pain down my leg with PMR. Pmr is really affecting my low back and SI joint. I have a lot of back issues, but when it is caused by PMR it is different. I up my pred for a few days and it helps a lot. Did your dr. discuss that long term use of the stomach med. can interfere with bone formation?

Good Luck

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Hi Linny. Its not at all like PMR pain and I can now tell that its in my buttock rather than my back with the pain radiating down the whole of my leg to my foot.

Bone formation was never discussed but (hopefully) I won't be on the PPIs for long, only while I'm taking the Naproxen.

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Hi Footfairy, your pain sounds identical to mine!! I have had major back problems for years and have always refused nerve blocking injections into my spine. ( major needle phobia). In fact, I refused them for 25 years!! But.... now that I know the procedure for these injections has moved from the stone age to the high tech era, I allowed them to be done a month ago. I have been pain-free ever since!! If your pain does not get any better given a little time, I would inquire with your GP about a referral. It's all done under heavy sedation and live x-ray and you don't feel a thing. No pain afterward either. Done as a day case surgery ( though it's not really surgery at all). It can give pain relief for a few weeks or a few years, that's the luck of the draw. Hope you get relief soon.

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Oh you poor thing. I can't imagine having this pain for that long 😱😱😱. I'm so pleased you have relief now 👏

I don't think I can put up with this for very long. Can't even sit down!

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I was the same, couldn't get relief from either sitting, standing or lying down. Was at my wits end! I ended up suffering from depression, due to the pain and a few other, family, problems. My GP put me on Duloxetine (an anti-depressant) which was supposed to help with both. It helped a bit, but it is very addictive and I found it hell to come off of after just 4 months of being on it. Horrendous side effects!

But these things work in different ways for different folk, so it's up to you which path to take really. Very, very, very, Good luck.

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💕

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Hi Footfairy

Sorry to hear what your going through, l’ve had different Anti Inflammatory’s along side Pred (same warning on leaflet) so try & take them at the same time as food to help protect your stomach further.

It may take a few days to really help but fingers crossed.

When l have anything new prescribed l always check with the Pharmacist for Contraindications with any other Meds l’m on, that’s why like to keep to the same Pharmacy as they have your history.

Hope it improves soon 💐

MrsN

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Thank you Mrs N. That's reassuring.

I also always use the same pharmacy, but didn't check. I have to go back on Friday to pick up my Pred order so I'll check then. Good idea.

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I had to have Antivirals once & they can be a bit of a ‘bad boy’ so l had a discussion with the Pharmacist & worked out a plan, well worthwhile.

I just read about your leg giving way 😱 hope you’re not hurt too badly 💐

Let’s hope the Naproxen helps.

MrsN

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Nothing too bad, thank you x

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Interesting that the antivirals were a “ bad boy” . In what way? Xx

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They can have very nasty side effects & interact with other Meds, plus l’d only just finished Chemo x

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Right! Thanks xx

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When l had my Chemo they stopped some of my Meds for a few days except the Pred & they add in Dexamethasone plus lots of other things, like the self injections to build up your white blood count, they are horrible, not to do but the side effect 😖

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Your ride has certainly been bumpy Angela but then I feel it has helped you to empathise with other folk on this journey. Xx

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Oh, I hope you're feeling much better now 💕

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That was over three years ago now, it was just a discussion the Meds that l mentioned it.x

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Hae you tried a tens machine? Quite cheap from Lloyds pharmacy. CBD oil (I try everything) and tie heat pad around your back (I went to work with a microwaveable bunny tied around my midriff once!). So sorry your pain sounds horrendous. X

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I'll look into a tens machine. Never used one but hear they are good.

A microwave bunny sounds like an interesting look 😂 Thank you Pongo.

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Yep the original bunny girl....

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Tens machine, you cannot use them if you have Atrial Fibrillation or any sort of Heart Problems. The trouble is you do not know this until you read the leaflet..........so check it out.

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Thanks for the info jinasc. I don't have these conditions but it'll probably help other to be aware. 👍

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So pleased to hear that..............

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It is a concern when you read directions on pills that are different to your GPs advice.

If you have been ok so far , and you make sure you take them with food taking them at least until you go to the pharmacy might be a good idea.

Just keep an eye out for any other side effects like breathlessness , increased vision issues or headaches that are unusual or any rashes , this could be an allergy , intolerance or a reaction to taking both meds at once which means you should stop it.

If you are ok with it from your few days test, the pharmacy will give you more expert advice.

If you are meant to be taking them for a short time the Pharmacist may agree with the GP that it is fine to get you through the worst of the Sciatic Pain and prevent it causing a pMR flare.

I wrote lots of tips to you earlier , so I won't repeat them , but I am sure they will help to improve it . I see you are going to have a bunny strapped to your back , this does help .

And when you do that lying on your stomach exercise you can put the hot and cold packs on then too .

As you will have some leg weakness from PMR , it is possible that you could loose your leg beneath you with Sciatica. You let can give way , or jerk in a way that you lose balance , but that often means it is a trapped nerve not just impinged or pressed from other muscle inflammation. So keep an eye on it , if you get other symptoms or are still worried , go to out of hours at a hospital or A and E , where they are more likely to organise x-rays or a scan just to check there is no damage being done.

And just keep in mind that sudden leg weakness could happen again until it has recovered so be prepared in case you have to watch were you fall and make sure you can put out a hand or have something to support you.

Take care and do post again when you have more news , hopefully good, xx

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Many thanks Blearyeyed. It's so good to have all of this information and help. The leg weakness is worse this morning so I'm holding on to everything I pass by.

Going to have some Remedial and manipulative therapy later today. He said a lot of his clients come to him with sciatica so I hope this helps. 🤞Tablets not working very well 😱

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Be prepared to be a bit more wobbly and feel very tired after your therapy.

Make sure you rest after it and relax body and mind today , maybe even tomorrow, and keep an eye on how your symptoms are for both your Sciatica and PMR for a few days after any therapy or new drug , good as well as bad , to assess how it works for your whole body not just what you are being treated for.

I hope it helps , but also no from experience that sometimes what works for one thing plays merry hell with another, and new things can trigger mini flares, so be prepared.

Good luck and hope you feel better with it , let us know , hugs , Beexx

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The only thing that worked really well for me was a nerve suppressant Duloxetine. I take naproxen and I have sweating. Not sure if it's related with everything else. Amitriptyline didn't work and makes people sleepy?. Not me though. Still have the occasion all twinge but really manageable now.

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Hi Estellemac. Is the Duloxetine by injection? I've had the sweating, but that's from the pain I think, because I've had it from the start.

Thanks for the info 😊

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No it’s a capsule. 60 at night to start then I upped it to another 40 in the morning. Worked like Pred on PMR.

I have read if you have it for more than a year a doctor should treat the cause not the pain. Had mine over a year. Could also be due to pyriformis syndrome where the muscle traps the nerve.

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No it’s a capsule. 60 at night to start then I upped it to another 40 in the morning. Worked like Pred on PMR.

I have read if you have it for more than a year a doctor should treat the cause not the pain. Had mine over a year. Could also be due to pyriformis syndrome where the muscle traps the nerve.

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You have to judge your sweats unfortunately from when you get them.

Not all sweating is the same , some of it is the old symptoms returning in a flare.

But sometimes if it starts at the same time as beginning a new medication or treatment it can be induced by the change or drug.

If you get a new of symptoms return at the same time as starting a new drug or therapy and it continues for more than three days you do needful start considering wether the changes to your overall pain are worth the side effects , and discuss it with your GP just in case they think it it not appropriate for you. Bee x

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Thanks B 💕

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How about some acupuncture? This sounds like a pretty bad case of sciatica!!! sending hopeful healing thoughts your way.

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You need to be very careful with Acupuncture or Massage with GCA/PMR and other AI related diseases.

Sessions should always be short , especially with acupuncture you should have a test session only to see if the needles cause an AI related allergy reaction in the skin or just get sudden pain in areas of the body , even far from the needle site.

Many sufferers get pathergy reactions where the needle prick grows to a hot spot with inflammation for three or more days. This also can happen after injections or blood tests and is an AI response .

Massage can and has caused people alot of pain on the table and off . So only Massage Therapists who have experience of the right massage for AI and arthritic diseases should be used. And sessions should be shorter and built up to see wether a flare is caused rather than the therapy you wanted from having it.

And with aromatherapy mixes , you should always check the blend of oils and make sure that none of them contradict with your medications , the skin based reactions can be horrible!

It's a minefield isn't it! Bee x

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It's definitely a minefield! Good job you're here to warn us 😘

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I know I sound like " No Fun Mum" sometimes , it makes me feel very sad as I'm really " get out and party " on the inside😘

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We need all the info we can get here.

I know what you mean. In my head it's "when's the party, dance, do" and I'm up for it. Unfortunately my body's saying differently. One day it'll all come together so that we can all get back to enjoying life. It can't come quick enough for me 😊

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Yep , the party in the " New Normal" is usually under the covers with a hot water bottle and the hope you don't need another wee or your insomnia creeping in.

We can always dream of the days of dancing until 2am instead of pacing the floor quietly in the dark.

I am convinced we will all manage it when the PMR takes flight and the " Old Normal" is allowed back in again. xx

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❤️

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oh. so glad you told us that. I have No trouble with pretty intense massage.. lots of fascia work too.. but I was thinking about having acupuncture which I used to love..from time to time.. and will perhaps delay that !

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You might be one of the lucky ones , as you are able to still enjoy a lovely massage.

Gosh , I really wish I still could , and lots of us are like that now and get an inflammatory reaction from the pressure on the muscles instead of the relief you really want.

As I said , you can always discuss it with an acupuncturist that is recommended by your local Pain Clinic and already works with people with medical pain issues , then ask them if they can give you just a few tests needles in non pain sites first for a short time to see the reaction . If it's fine , short session next and away you go!!

It's worth testing it if you know you got benefit in the past.

I am all for using anything that helps , I find steam rooms and heat therapy most helpful these days.

Take care , Bee xx

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ahhhh love that steam room!!!

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Does it really help you too , can't believe how much less stiff I am after one , I think I would live in it if I could , perhaps I was a rainforest frog in a former life! xx

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Yes - I loved the steam room, better than the sauna, for the 5 years of no-pred PMR. And I'm OK with even deep tissue/mobilisation massage - I feel worse briefly post massage but a gentle walk and plenty of water to drink sorts that out and then I feel much better,

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Yes definitely , plenty of mineral water before and after any treatment or exercise helps you get the benefits without the post treatment inflammation.

I take a bottle with me for anything and drink as I go to , to stop any dizziness that can happen for me with the BP swings and heart rate.

It's funny isn't it , I still quite like a sauna but it's not asxnice as it was.

But the steam room is a godsend , wish I had one at home . Perhaps we both evolved from a pair of rainforest frogs !!😋😁😘

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Is that where the eyes come from????

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Could be , either I look like I'm half asleep or wide eyed and startled these days , just like a frog !

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😘

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I have to say... PMR has not been so awful for me as for others..mainly because I do so love laying around doing nothing. and sleep comes easily ! I said years ago...before i knew anything about autoimmune diseases...that I would never know if I had chronic fatigue syndrome because I rest so much for no reason!!!

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Yes , I said that at times too , although I was really active I could also happily stay in bed until midday when I felt like it.

When I was a teenager , my friends Gran said , "Your always sitting about , you could have found the last good spot to sit on as Titanic sunk !!" Never forgot it , so funny , probably true!😋😂😂

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hahahaha I love your friend's Gran. feel just like that. it is feast of famine with me. going X country skiing in about an hour then if I survive I will lie around the rest of the day. Was like that before PMR. maybe a 20 mile bike ride and then NOTHING. ... ! just my nature I think. (in all things pretty much. binge a bit then fast. (with food exercise romance what have you all my life!) never food purging .haven't had that problem. but certainly could have...

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