Pain Clinic

[TM1970]

Hi, I’m wondering if any of you have attended a ‘pain clinic’ before? I’m concerned if I attend appointment set up for me that they will stop or reduce my pain meds. My rheumatologist says a lot of medicsl are too overzealous about the opioid crisis, but I literally could not manage without them. Can they change meds without your primary care team’s consent? Thanks. Tx

[Jmiller623]

Hi TM! They can change your meds but from experience, pain clinic docs are pretty sympathetic to CTD patients. It’s usually a certain personality (drug seeking, large opioid doses) that really gives them a red flag. Typically they do a good med review and figure out what your daily opioid use is and convert it to long acting with as needed short acting. They try to minimize how many meds you need. They may offer other modalities to help treat pain outside of opioids. Don’t fret. Ask questions.

I hope all goes well! Please let us know how the appt goes. I hope they exceed your expectations and leave you with a good pain plan. ❤️

[TM1970 in reply to Jmiller623]

thank you so much. The pain is unbearable now. Do you mind me asking, I know from following you (that sounds so creepy ha ha) that you’re a doctor. If my neuropathies are really bad does that mean the lupus is active? I was chatting to another member today and she mentioned that. I know the disease causes the neuropathies but I’m not sure if it can flare independently. I’m unsure which type I have but it’s affecting my whole body from swallowing to walking. Many thanks for any help. Terri X

[Jmiller623 in reply to TM1970]

Hi Terri. I don’t mind you asking me as a fellow chronic illness sufferer. I typically will chime in if based on my own experiences but by no means do I want to give the impression that I’m a proxy healthcare provider. I hope you understand. Some people on here are many times more knowledgeable than I.

But as a fellow lupus sufferer with profound neuropathies, I can say Plaquenil helped most with joints, skin, hair but I’m still left with significant neuropathic symptoms. I was referred to neurology and will also see neuro-optho in April for some eye movement abnormalities. My rheumatologist wants to make sure there isn’t something primarily neuro going on in addition to lupus. So maybe if 2 diff disease processes, they may flare independently but usually have similar triggers.

So in short, it might be a good idea to also ask for a referral to neurology if your symptoms are systemic/all over, persistent and you’re on treatment.

I hope this helps answer your question. Sorry you’re in so much pain. I hope you find relief soon. Keep us up to date with how your appt goes!

[TM1970 in reply to Jmiller623]

Yes of course I should’ve thought about that. I don’t get on with my present neurologist unfortunately and so I’m really hoping the pain clinic can help. I feel very lost and I cannot bear the pain anymore. Is it only a neuro who can investigate and treat?

[Jmiller623 in reply to TM1970]

This is where my experience with neuropathy ends. I also didn’t have a great experience with my first neurologist so I am going to ask the neuro-optho person if he can take me as a neuro patient as well since his primary appointment is neurology.

I think neurology would be best able to confirm neuropathy and what type it is but I don’t know if it’s the only specialty that manages it. Maybe ask pain clinic if they recommend anyone in particular. I can say that Wellbutrin/bupropion did help some with my neuropathy symptoms (see publication below) which allowed me to be somewhat functional but there are still some really bad days.

n.neurology.org/content/57/...

[TM1970 in reply to Jmiller623]

Many thanks to you all for replies , much needed and appreciated. Txx

[ange726]

Hi TM1970

I agree with JMiller623. I loved my pain clinic appointments because they were sympathetic to pain. Dr's who specialise in pain truly understand the chemistry between how meds are made up and how they interacts with pain. I have CNS Lupus and it was my pain Dr put me on opiates and for the long term. It wasn't even the usual opiates but one that isn't commonly known but keeps my pain at bay for the most part.

Please don't fret but dare I say look forward to going because they are the true pain experts.

Good luck and let us know how you get on.

Sending healthy thoughts. Keep smiling

A.

[TM1970 in reply to ange726]

Thanks Ange, I have CNS lupus too! We’re a rare species, I’m feeling so much better about the pain clinic now, I was terrified they’d stop my painkillers. Do you get rituximab? I ask because the last infusion I had it was a ‘bio similar’ and it hasn’t worked one bit, I’m sure it’s because of brand. X

[ange726 in reply to TM1970]

Hi TM1970

Good to chat to another CNS person. No not taken Rituximab. Will that be similar to what I am on, Mycophenolate Mofetil? I also take hydroxychloriquine for the lupus part and for the pain, Tapentadol (opiate) and Nortriptyline (tricks pain receptors in brain at night so I get to sleep).

It took 18 months to get the right combo and balance of meds but now I'm living as normal as you can life.

When we're you diagnosed?

Ange x

[TM1970 in reply to ange726]

Hi Ange, vasculitis 2010; SLE 2015: CNS Lupus 2016. I’ve tried everything, but I’m going to give amtrypaline another shout. Ps how awful are the mri of brain, head locked in a cage as if the mri itself isn’t bad enough..!x

[CecilyParsley]

Hi I attended a pain clinic. I was so disappointed as they said they had no remit to treat for Lupus or Bechets just Fibromyalgia as that was all that the Rheumatologist had referred me for. They did not even consider removing my morphine just wanted me to take paracetamol in addition and to increase my Garbapentin. I choose to do neither and was discharged. I do hope that your experience is more positive. Good luck.

[TM1970 in reply to CecilyParsley]

That’s my fear that they won’t know my history and try and take meds off me. My rheumatologist got a gp at my surgery to refer me as my gp is off on long term leave. This other doctor is a heart sinker ha ha. Sorry to hear youre struggling so much, don’t give up, no matter how many times they give you the ‘look’ or try and foist diagnoses on you CP. x

[CecilyParsley in reply to TM1970]

Thank you so much. I get doctors telling me I am on so much medication as if it is my fault 😡. Had I gone with the pain clinics advice I would have been on 15 mg mst twice daily with 500 mg paracetamol four tines a day and nine Garbapentin 😱. I take 10 mg mst twice daily and two Garbapentin at night. I don’t want to feel so drugged that I cannot function. There was no attempt to remove my mst but to increase it so I would not worry too much xx

[TM1970 in reply to CecilyParsley]

Thanks CP, I’m so furious for those of us who are treated that way by the medics. It’s literally pot luck if you get to see a truly caring medic who goes over and beyond, I had a dream team, now my neuro has retired (replaced by a ***)my lovely GP is off on long term sick leave (another *** deals with me now) and my rheumatologist is off ‘for the foreseeable future’. I don’t mind telling you I bawled my eyes out, I’m still really upset because their replacements are the horrible kind. But CP look at Twitchy Toes, she’s one tenacious lady and has finally found a respectable team. So don’t give up. I totally understand what you’re going through. Probably most on here do. Take care X

[CecilyParsley in reply to TM1970]

Thank you. I agree completely. I am so stressed going to appointments now I cried when the latest Rheumy said UCTD because I fully anticipated the Fibro and hysteria tag to stick. I really hope you get a decent doctor at the pain clinic. I wish they understood how harsh, unkind or indifferent attitudes for the ten minutes they see us lasts for weeks and months and impacts our wellbeing significantly xx

[TM1970 in reply to CecilyParsley]

Exactly CP, my new neurologist is a piece of work. I’m glad you got your diagnosis (only us Autoimmunies understand why bad news is good news) no longer are you fighting a faceless enemy with no weapons.xx

[lowraind]

I asked my primary for an appointment with a pain management doctor. He in turn had me see a rheumatologist and occupational therapist. The rheumatologist had me see a physical therapist and also an orthopedic surgeon. None changed meds and I have kept my primary and my nephrologist informed throughout.

[TM1970 in reply to lowraind]

Thanks Lowraind X