Pain, pain, pain and more pain

Evening all,

Not doing to well with my flare up this time. I’m having difficulty controlling my joint pain. I have now and in the past had nearly everything that I know of on the drug market for pain. So there is no single drug that works, they usually have to be prescribed in combination. But I think I have exhausted many of these too, so any tried and tested pain med. drug combination ideas are welcomed.

My pain has been so bad the last few nights that I can’t even fall to sleep. In my feet I can feel nearly every bone in them, they are continuously throbbing; my knees just pond and burn; my fingers (I could have easily chopped them off last night) and hands feel like they have been run over by a tank; my neck and lower back is as stiff as a plank of wood; just a twinge from my elbows and sore hips. So I think that covers nearly most of my anatomy.

I have tried the relaxing bedtime routine, taking my meds and making sure that the room environment is conducive to sleep, my bed is comfortable and I have gone to bed at a reasonable time. As soon as I lay down all tucked in I become aware of the pain I have kept myself distracted from during the day. It is so overwhelming I can’t even describe it. Last night’s pain was indescribable.

I have seen my GP, pain meds have been increased, first biologic was taken on Monday and I’m still in pain.

Can a flare up really get this bad? The only way I can see me being pain free is to have myself put under a general anaesthetic.

If anyone has any helpful tips, ideas or anything else that I can try, I’ll be more than happy to listen.

Thanks for reading.

Nicole x

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I understand. Doc lets me have a low dose of Oxycodone, but it doesn’t reach the hands and feet. I don’t want to take anymore than I am now, it is just 5 mg.

A suggestion. When lying in bed, concentrate on your breathing, it takes your mind off the pain. Google belly breathing and watch the videos. Learn to do that while lying in bed. I do it and it helps (sometimes).

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My iPhone was acting up and I couldn’t read your profile, so I’m wondering when you were diagnosed with PsA. Because we all have symptoms, of course, but they do usually keep getting worse. Well, I shouldn’t speak for everyone, but in my case my symptoms weren’t too bad when I was diagnosed, and they waxed and waned for a few years. But at some point they started getting worse and then it snowballed. By the time I got my first biologic injection I felt like absolute **** ! I’m thinking you’re at that point, and I’m hoping that biologic you just started will kick in soon so you can feel something close to normal again.
I’m sorry to hear it’s been so awful. Hopefully, you’ll notice a lessening of the pain over the next few days.
I was going to ask—do you use a heating pad or ice packs? Sometimes they can help tons more than you’d think they could!

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Hello tamac,

I’ll have a look for the belly breathing today. It sounds similar to the breathing you do in mindfulness.

I have been on opioids both in oral and patches form and came off them about 18 months ago and promised myself then to stay off those. The side effects far outweighed the benefits and this for me would be adding wood to the fire. In saying this, the way I feel now it would be good to be numb, even if it’s for a few hours.

Nicole x

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I forgot to ask if the oxycodone allows you to function OK during the day or does it impede on how you manage your daily activities.

Nx

Hello Grandma,

I was diagnosed 3 years ago and it’s taken almost 10 months before starting biologics on Monday. My Rheumatologist had me for about 8 months on methotrexate, which was a total disaster and the last 2-3 months I was waiting to see a respiratory consultant so that I could be prescribed drugs for latent TB, which they discovered when testing me for the biologics.

As for the pain, I’ve tried the heat pads you can warm in the microwave and gel ice pads, but the effects for both are limited. I even tried rubbing ibuprofen and levomenthol gel in my hands last night. They burnt but it was a nice burn and anything was better than feeling the pain.

I’m hoping you’re right and the biologics does kick in soon.

Nicole x

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Hang on in there honey, hard as that is. I was diagnosed almost a year ago and I was distracted by the severe pain. Steroids helped then methotrexate worked for a few months then my disease rapidly progressed and it wasn’t working enough, plus my hair started falling out. I’ve recently started Erelzi (Etanercept), a biologic. I’m on my fifth injection and working through a mahoosive flare! My Consultant yesterday suggested I go back on a lower dose of Methotrexate in addition to the biologic. And he injected anaesthetic and steroid into my worst knee joint that was stopping me walking. Today, the day after, and everything is calming down thankfully. I can’t take pain meds as they make me poorly. Apart from simple paracetamol which barely takes the edge off. Can you ask for steroid injections into the worst affected joints plus an intramuscular steroid injection into your gluteus maximus (bum!) for overall inflammation control and pain relief? It really works for me. Hugs :hugs: xxx

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Hi Nicole,

Another Kent person here as I think you know. Gosh I’m so sorry to hear this. Any chance that an initial high dose pred (steroid tablets) tapering off say 2 to 3 weeks could help just initially until you see if the biologic kicks in? It’s the only drug that capacitates me as painkillers of the opiod variety do nothing other than make me cry. However even at my worst I doubt my pain levels have reached yours. The steroid injection in the bum that Katie mentioned wasn’t a good for me as the steroid tablets but I’ve certainly heard it works well for others, Katie included.

Any chance of a few days worth of diazepam to see if that might help? I’m sure you’ve been through all of these and more but it’s all I can think off. I get the need to be numb even just for a few hours, hence the diazepam notion as it can literally switch off your brain’s pain receptors just for a while. Last summer I thought I was going through a phenomenal flare, but it turned out I had two fractures in my pelvis. Why they occured isn’t known as it wasn’t osteoporosis. Then the only thing that helped my pain levels then was diazepam. Took them for about a week only and they gave me a break just long enough to regain more coherent reaction to the pain levels which I could then tolerate.

Any chance you can put a call into your rheumy dept today to explain.

Big hugs from me too. x

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Hello Poo,

I did ask my GP for a steroid injection last week but the concern is that I’m on antibiotic treatment for the latent TB, of which I am suffering with all those side effects and they really don’t want my immune system being depleted any more as I started the biologic (Consentyx) this week.

I am usually an upbeat person, (well try to be) and take everything in my stride, but the last few weeks have been hell. I liken PsA to a form of mental and physical torture. I know this sounds OTT, but it does make me wonder if we are part of some big social experiment.

Thanks for the advice though. I will call my rheumy nurse today,

Nicole x

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So the antibiotics with Consentyx isn’t contraindicted as with the enbrel/humira type biologics? I didn’t know that.

And no you’re not OTT - PsA can be a form of mental and physical torture. My thoughts for whatever they’re worth is knocking out those pain receptors in your brain just for a short time, often resets them a little more coherently. And if I was in your situation that’s what I’d be asking your med team to try and do. x

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The TB treatment last 3 months and once you’ve taken more than 2 weeks worth of meds you can begin the Cosentyx. I had nearly a months worth of treatment before starting. What they don’t tell you is that the antibiotics increases joint pain. So imagine a PsA patient taking this! My pain as I have mentioned has ramped up big time and is relentless. On top of that you have nausea, fatigue, lower abdominal pain and all of your bodily fluids are orange, my urine, saliva, sweet. I’ve been told in extreme cases it can turn your teeth orange. So all in all, not good. I have a batch of 5mg diazepam that was given to me for my prolapse discs in my lower back. After lunch today I’m going to have this and hopefully a very restful sleep.

Thank you so much for communicating with me. It can be very difficult to explain how you feel to people (like my other half) who are well and have never suffered with anything.

So thank you :blush:

Nicole x

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You poor thing! I can’t imagine what you’re going through! You are right in saying it’s hard to explain to someone (your spouse, children, coworkers, whoever) how it is. But we do understand, even though we’ve not gone through exactly the same thing. Hang in there! There are better days ahead! OMG how terrible to have to take the antibiotics that make your joints hurt more!!!

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The breathing is the same. I am also a professional hypnotist and treat people for chronic pain and learning to breathe this way is very important.

I tolerate the 5 mg oxycodone well. It is not enough to relieve the pain, that is almost impossible. But, it is enough for me to take the edge off so I can think. I tolerate oxy better than hydro. Much more than 5 mg is going to be noticeable for most people, especially if you are small. I’m a big guy and it is just enough I don’t moan and groan all day and will help me get some sleep.

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More big hugs of the cyber variety (so they never hurt anything). That’s why forums like this help as we do ‘get’ so so much of it. Hope you have a decent rest today at least. x

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Hi Nicole

I’ve just been diagnosed so can’t really help in terms of the medication as I’ve not started mine yet. Have you tried using a Tens machine? I love mine it’s the best thing I’ve ever bought. I’ve also bought coconut oil and aromatherapy oils which I’ve used as a rub on my fingers when they’re painful. Sending you cyber hugs and I hope it eases soon xx

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I have no idea if medical cannabis is available, but it works well for me. In times of intense fares, it does not eliminate the pain, but makes it bearable and as a sleep aid, it has proved invaluable to me.

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So I have read through all the replies and they are all full of good suggestions. Unfortunately we all know this is such a GREY disease in that it’s a trial treatment and retry again as the disease changes in out bodies. I have found that a 30mg shot of toradol REALLY helps with severe flares. This is a very strong anti- inflammatory drug that is used in postoperative pain management. This med has drastically reduced the need for narcotics post op. So you might be thinking, why would this help me? Well this med helps to punch a big hole on the pain loop that happens with us. For me, the shot most of the time does the trick within 4 hours or so I feeling much better. I reserve the shot for my worst flairs so I don’t loose the effectiveness. I cannot and do not want to take narcotics for pain. Anaphylactic reaction. Medical marijuana definitely helps with pain and using more fore sleep.

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I just started Prednisone for a flare. Got a shot and then pills for 12 days. Painin hands driving me off the deep end. Waiting for a new biological to kick in. Don’t be afraid to call and ask about steroids. It takes several doses to see how well you will respond to the biological. They leave that piece out. Ice packs and warm moist heat are your friends. Soaking in the tub. I sometimes use

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I sometimes useOTC Icy Hot, Or Bio Freeze spray. It helps. My pain is also worse at night. Audio book helps me fall asleep. I take Vicodin everyday.plus tyle nol. I was diagnosed 6 years ago but probably had it longer. Can’t take nsaids because of ulcers. Don’t suffer in silence. Call the doctor.

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Thanks Bern and everyone for your ideas. My flare seems to have settled down slightly. It’s worse at night, so I’m using rubs and pain medication with Tamac’s deep breathing exercises idea to fall off to sleep. I’ve had 5 hours of broken sleep over the last 4 nights which for me is good. My main problems now is the fatigue, joints swelling and stiffness. I usually don’t have that much swelling just pain in the joints but with the hot weather it’s not been good. It’s 7am and already my ankles are stiff and swollen. I’ve been limping around the house the last few evenings, last night was the worse, I hobbled around like Quasimodo.

Looking forward to limping through today and feeling knackered while doing it.

Once again thanks for all your advice.

Nicole x

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