3”Polys”: I have PMR, Seronegative Poly Arthritis... - PMRGCAuk

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3”Polys”

Constance13
Constance13
40 Replies

I have PMR, Seronegative Poly Arthritis and now Poly Neuropathy.

Because of severe pain my doctor has suggested I take Tramadol. I’ve read the side effects and they don’t sound pleasant!! Anyone had experience with this drug?

40 Replies
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MrsNails
MrsNailsModerator

Oh dear Constance, looks like you’ve got a full set now!

Personally I’m not a fan of Tramadol, it doesn’t suit me but my good friend takes it with No ill effects!

Suggest you try a half dose to start if you’re uneasy about it, if it suits it works well.

Good Luck 🍀

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SnazzyD

Hello, sorry to hear about your Polys. Tramadol does cause problems for quite a few (making them feel poleaxed) but many are fine with it. The good thing is, it is something you can stop after a week or so if you don’t like it. As MrsNails says, try half a dose.

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Yellowbluebell

I have been taking tramadol for a number of years on and off due to 8 shoulder operations and the only side effective i have had is it makes me a bit sleepy. The pain relief it gives me more than makes up for the side effect. If you decide to use it you need to first try taking it when you don't have to drive anywhere or do anything that could be dangerous if you were suffering from any side effects. See how it effects you and decide if it's the pain killer for you. Good luck. Let us know how you get on.Yellowbluebell

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Pongo13

One poly is enough so three sounds grim. Poor you. Hope you get the right meds. X

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Marymon

Sorry I can't give you advice, only say I hope it works, you must be in a hell of a lot of pain. Xx

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Constance13
Constance13
in reply to Marymon

I am!😟

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MrsNails
MrsNailsModerator
in reply to Constance13

I think you might be a good candidate for a Pain Management Specialist. They are usually Anaesthetists with a Special Interest in Pain Management. My Chap diagnosed my PMR & said l was actually a bit on the young side but he wouldn’t like to rule it out!......

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Constance13

I have been in 3 pain management clinics, they were exhausting - five treatments of 1/2 hour per day. That was then, up to two years ago. Since then things have deteriorated big time and now the maximum exercise I can cope with is 15 mins per day. I am knocking 80! Old age is such a “happy” experience.😀😀

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MrsNails
MrsNailsModerator
in reply to Constance13

Oh Constance we must have been to different types of Clinics, mine was all about the best way to treat & manage my pain with Meds, a Tens Machine & heat. No Exercise or Classes.

Hope you can find some relief soon 🌺

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Constance13

Thanks Mrs N. I use all those things. They do help a bit don’t they? The problem is it’s sooo difficult to walk (except round the flat) and I do miss wandering round the shops, etc.

I get plenty of fresh air though (if you can call -8C just fresh)!! because I have a mobility scooter. But in these temperatures I don’t bother.

Roll on Spring!

Constance. 💐

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MrsNails
MrsNailsModerator
in reply to Constance13

I’m glad you have the Mobility Scooter Constance, l do most of my shopping online but still like to go to the shops but mainly just to look.

Hope the weather gets warmer soon & Spring will be here before we know it! 🌼

Regards

Angela x

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Neverending63

Never had any problems with tramadol but it sent my dad loopy lol. I think it is a very personal experience and it’s a case of trial and error.

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CT-5012

I too would suggest getting a referral to a pain management clinic, I have used Tramadol with no side effects but everyone is different, you can always stop if you have side effects.

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peace_lover

I had Tramadol some years ago and had a very strange “out of body” experience with it so stopped using it. I’ve not needed it since and might consider using it again if I was in severe pain as I didn’t wait long enough to see if the side effect would pass, as they sometimes do when the body adapts. You can only try it and see how it works for you.

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scats

Do hope you find something to give you some relief xx

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HeronNS
HeronNSAmbassador

Oh, dear Constance, how difficult this is for you. I expect you are aware that like all opioids Tramadol becomes addictive with continued use and like all opioids it may become less effective after time and dosage may need to be increased. Would it work well enough for you if you were able to use it only on an occasional basis, or do you need something every day? Do you know what has caused the poly neuropathy?

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Constance13
Constance13
in reply to HeronNS

The nerves are “damaged”, both hips and both ankles. They are only “really” painful in the night so I would only need 2 Tramadol at night.

The PMR is under control at 4mg, the arthritis is in my wrists, hands, elbows, hips and knees and I take Cocodamol to ease the pain during the day (no more than2). If that makes me an addict - who cares?😏

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GOOD_GRIEF

You've got a point. Just make sure to eat your prunes so you can avoid the constipation issue...

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HeronNS
HeronNSAmbassador
in reply to Constance13

I agree, you weigh the risks and do what gives you quality of life!

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piglette

I use Tramadol as a painkiller and it really works well for me as it is an opioid. I do find it can cause constipation though in my case.

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SheffieldJane

I was lucky with it too. No discernible downside except the spectre of addiction.

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enan-illuc

Constance13,

I have taken Tramadol and it was effective for me. I did find that often a half dose worked for me. I am a believer in 'minimum effective dose' (MED). I hope this helps.

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Joaclp

I have a version of the 3 polys and find that gabapentin added to low-dose opioid at night (not tramadol) makes a difference with both the arthritis and the severe neuropathy. But, then, I seem to handle medications well. Good luck getting relief.

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Constance13
Constance13
in reply to Joaclp

How does the neuropathy affect you? I am very ignorant about the human body, illnesses and medicines.😏 I must admit I had never heard of neuropathy. I just stopped listening when my rheumy said “Poly...” - not another one, I thought!😀

Mine is ‘burning’ in both knees (left one far worse than the right one) and both ankles. Worst at night, bearable mostly during the day. That, together with the arthritis, has made my ‘balance’ very wobbly. My rheumy said “don’t ever go outside without a rollator” (never do anyway)!

Your comments would be appreciated.

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Blearyeyed

Sounds like me sometimes , especially after exercise.

Jenny jelly legs!! But I have not found the tramadol any help for that type of pain , it helps to an extent for my back and neck pain .

The drowsy thing does decrease , and strange dreams or sleep patterns , lack of motivation can go in a week as you get used to the new drug ( starting on the lowest dose then working up helps ) if it doesn't go though it is worth finding another option .

I take Pregbalin rather than garbepentin now for the neuro related pain , it can take less time to get accustomed too , makes you less drowsy , affects the stomach less and is more effective ( they don't offer it first off as it is more expensive ) but again that doesn't do anything to help except the neuropathy pain , does nothing to help my joints pain from PMR / GCA or burning either.

Not worth getting on the tramadol treadmill in my experience unless you feel a real impact from it on your symptoms very quickly. It is a opoid , and I would prefer to leave it for the severe , acute or intense pain that can come with other illnesses or symptoms that do respond well to these sorts of drugs.

I also advise anyone to avoid Codiene like the plague . The pain relief that gives the gift of pain as it leaves your body.

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Joaclp
Joaclp
in reply to Constance13

Constance, I will answer you later today or tomorrow. Have a very busy medical day. All the best, JoAnne

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Joaclp
Joaclp
in reply to Constance13

I didn't reply as promised, because I was busy and then not feeling well. I don't have an answer about Tramadol, but if you still want to know more about my conditions, I can answer here or you can message me. Hope you are feeling better.

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Constance13
Constance13
in reply to Joaclp

Thanks for replying Joaclp. I would just like to know what you do to relieve the neuropathy pain (in my case “burning”).

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Joaclp
Joaclp
in reply to Constance13

I take gabapentin. I have had to increase the dose, because my neuropathy is very very bad. There are unpleasant side effects, but they decrease/subside with time if one sticks it out. It is the only thing that gives some relief of the burning, numbness, and muscle clenching in my feet and legs up to my groin, and in my hands and arms. It is worse than my autoimmune arthritis (poly) and PMR, Sjögrens, and osteoarthritis. There are other medications they use for neuropathy but gaba is usually the first. I take it with Percocet, which contains oxycodone. The oxy is something I have taken for years for arthritis pain and it works well with gabapentin for me. At one one point, I didn't sleep for 3 months straight due to neuropathy!! So, I'm grateful for medication. But as I said before, I'm not particularly sensitive to medications, so I'm not easily affected by side effects. All the best.

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mtrafter

Tramadol also sent me loopy, wierd dreams, felt totally spacy would rather have pain than try them again! But having said that we are all different it might be worth a try with a small dose initially. Wish you well in seeking relief.

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katiemills

Hi Constance I've been taking tramadol on and off for 5 years for chronic back pain. I remember feeling very sleepy the first few times I took it but it doesn't have that effect any more . I'm one of the lucky ones because I've had no other problems with it .

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Pappowappa

Yes I have. My new gp doesn’t advocate them as they can be dangerous to some. Read up online about the findings. I found them useless for pain but helpful as an anti depressant. They are very hard to stop taking. I had lots of nerve pain coming down from only 4. I stay on one day for depression only. My gp wants me to stop but I would be at more risk being without! I don’t consider one a day an issue and believe me if I forget it, I become hysterical over the loss of my dog after giving him up due to immobility of disease. I can’t live like that.

As far as pain, it seems they work differently for people. In my case euphoria is their only effect.

Lots of info online!

Regards

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Constance13

Wow - not what I want/need at all. I’m a happy soul with pain.😏

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Omanain

I have taken Tramadol on and off for many years. I haven't had any problems except feeling a bit spacey when I first take them after a period of not taking them. They are a very good painkiller. Having said that, if I take them in the evening I do have trouble sleeping. But worth a try I should think if you are in serious pain. I realise they can be addictive but as I say, I go long periods (months) without taking any and never think about them unless I am in pain. As I am likely to have periods of extreme pain for the rest of my life, addiction isn't top of my priorities.

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Blearyeyed

What dose do they want you to begin with?

Was this suggested for the Neuropathy related pain ?

What other meds are you on?

I have Tramadol , it was originally given for Neuropathic pain , it can make you woozy and sleepy.

I haven't found any relief for the GCA/ PMR related pain from it , it made some impact on neuropathic pain but force personally the only time I found it most effective was with gastro related pain issues or episodes of short term ( acute ) intense pain from other symptoms than the chronic issues.

My friends with fibromyalgia seem to get more relief on them but then they also do seem to have quickly and steadily increased their doseage after the initial positive impact on their conditions .

More info , when I know more about the reason for the choice xxx

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Constance13

I’ve only just realised I wrote “Nephrologist” instead of “Neurologist” - all these “ologists!!!

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Constance13

The Nephrologist didn’t suggest them, my GP did. He’s known me for 25 years so he knows I wouldn’t overdose.

My only meds are Pred, & BP tabs, and Cocodamol for pain. Vitamins D3, K2 and Magnesium.

I just wanted to find out a bit more info from forum members before I started taking anything new. Don’t even know whether I’ll bother yet - I’ll see if I can cope first.

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Constance13

Neurologist!!!

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karools16

Yes. Many years ago, had leg ulcer and Tramadol prescribed. Was walking on the ceiling after just 1, so refused more. However, have heard some, on another forum, say it worked for them.

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cityfiedjerk

I take tramadol.i have for about 8 years. Before taking it I was going 5 nights or more no sleep.My feet we're on fire.I get 30 day dose 1 time a month. My Dr.will not prescribe any other way.So for me I never take more than prescribed or I suffer until I go get my refill from Dr. It literally has changed my life. I do know I would of not be alive if I hadn't met my Dr. My neuropathy was so bad.i was sleepy first few doses but that's it. Constance I pray you get help!

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