I wanted to know if anyone had ever been referred to a pain specialist? If so did they help with your pain symptoms?
I am in constant pain and am beginning to get to my wits end!! Cant cope with being in all this pain.
My ds dna antibody keeps rising and my consultant will not increase my hydroxy from 200mg to 400mg as she doesn't think I would tolerate it as she had to change me on to MTX injections as I couldn't take the tablets. She insisted that I have a steroid injection 3 weeks ago to help with pain and inflammation, but no use.
All the pain killers cocodamol, paracetamol, tramadol and amytriptyline are not helping one bit. I might as well be taking smarties - there is no relief.
I am due to see my rheumy nurse on Wednesday and wondered if I should ask to be referred to a pain specialist. I am desperate for help cant cope anymore.
If anyone could advise I would really appreciate your insight. Thank u. Good health and best wishes to you all.
Lupie hugs
Esky x
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esky
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I have had a referral to a pain management clinic, and have attended once.
They will take a history and then concentrate on the things that bother you most, for me it was not sleeping and being able to cope with flare ups of pain.
It's a very holistic service, they offer psychological help, physio, acupuncture etc as well as medication.
They won't interfere with your Rheumy's management of your Lupus, ( if methotrexate isn't working have they considered mycophenolate? )
I was referred to a pain consultant in '98 when I was booked in by the nhs for a BIG double cervical discectomy op, due to disc compression & spondylitis etc. caused by injuries+hypermobility.....the op was seemingly my last resort following years of limited success with lifestyle management etc + nhs RX NSAIDs & analgesics (these meds hadn't helped much at all). but at the vvvvv last minute before the op I reviewed my condition with the neuro surgeon who agreed I could try a pain consultant instead of undergoing such major surgery....this was THE best thing that could've happened:
Since then, I've continued with this hero pain consultant, who has performed a series of bilateral spinal facet joint denervations (cervical, lumbar & sacral) over the years....which have helped me cope leading up to my lupus diagnosis 3 years ago. more recently, he has helped further with my long term chronic lameness via steroid injections to a BIG CRPS (complex regional pain syndrome) in my forefeet....he even referred me to a foot wizard prof ortho surgeon on the other side of the country who is an expert in legs & feet & CRPS....this referral has resulted in me vastly improving my mobility.
Meanwhile, as of 3 yrs ago, rheumatology has got me on hydroxy+myco+amitriptyline+pred tapers which are all helping to greatly reduce any of my pain (including synovial spinal pain) that relates directly to my version of lupus.
So, yes: I recommend you have a go with a pain consultant....alongside your rheumatologist & any other consultants you see (eg eye clinic or whatever)
Thank u. Thought I had it bad. U have really been through the mill and still so positive. Thank you for your support means alot. Take care. Thank u. Lupie hugs xx
You're v kind....well, my age (60) + infant onset SLE means I can only have experienced a lot...this is how it is when we have multisystem autoimmune conditions....but, for me, it always seems others cope with greater challenges than I do. For instance, my hero husband has had a series of ops for crohns (another multisystem autoimmune condition that primarily affects the gi tract.) since university. This forum especially helps me to keep my issues in perspective.
It's great you're here on forum. I hope you'll let us know how you get on
I've been to Pain Management and wound up having 2 epidurals, 21 nerve blocks, 3 Nerve Burns, as well as multi joint injections. I was placed on a strong pain med, Cymbalta and Lyrica. The pain meds and the Lyrica seemed to help. Can't say same for all the injections. The ones my Rheumy did were more effective.
Awwww, hugs Esky. It's often pants trying to get symptoms under control. Have you tried the nsaid Nabumetone? It's really good and easy on the tum but unfortunately I'm one of the few who can't tolerate it long-term. Very strong and safe though and often given to kids with SLE or RA. What other nsaids have you tried? Generally, until you've tried everything your Rheumatologist can prescribe, in every permutation, to no avail, you won't be referred to a Pain Clinic. It's true they have access to drugs other consultants don't and newest out is Tapentadol, which was formulated to bridge the gap between Tramadol and Morphine but has no anti-inflammatory properties so useless to us for anything other than pain relief. Disappointingly, I found the Pain Clinic's alternatives for treating SLE extremely limited. Do some on-line research and go armed to Rheumatologist appointments with lists of nsaids not yet tried and eliminate them individually. You may just find one that works really well. Good luck! x
Thank u. Never thought to look into possible replacement nsaids to ask my rheumy about. Thanks for your advice. Just want some form of relief. Lupie hugs xx
You're welcome. I wish there was one magic tablet we could all take! You might like to look into low dose Naltrexone too - apparently it produces good results with SLE and will be the next thing I'll try : ldnnow.co.uk/
I see an antitheist at the pain clinic at our local hospital I have lower back problems budging discs and other problems.
The pain clinic staff are top of the tree for dealing with pain I have what they call spine blocks this is injections of steroid and anaesthetic in my spine this is done under a live x-ray in a hospital theatre they should last about 3 months but mine last around 6 to 8 weeks so I have morphine. If you get offered an appointment at the pain clinic take it you will find the staff are very understanding and helpful.
So sorry to read the amount of pain your in, it can be so debilitating for us when it's so constant . I can recommend going to a Pain Clinic , they can offer different treatments and pain management program's. I go to one as I've got nerve pain in my back and right leg and have help with injections. Hope you find relief soon.X
Hi esky - I'm an SLE patient, with renal problems (putting it mildly)! Following a kidney transplant several years ago, I caught shingles leaving me in chronic pain. My meds were not helping and the pain was getting worse so my renal consultant sent me to the pain clinic at Charing Cross Hospital in London. The consultant was fantastic, so knowledgeable, kind, sensitive and helpful. She spent over an hour with me on my first appointment and eventually decided on a new regime of meds. I now take 150mg of Lyrica (Pregablin) twice a day which seems to be working very well. I had to push my renal doctors very hard to get me this pain clinic appointment, but it was worth it. Good luck and I wish you well xx
Hi esky .i have been going to a pain clinic for over twenty years ...i found it was the only thing that helped my mysterious pain ..I then got diagonised with lupus pain explained and sle and sogerons .my twenty years of hell explained ..the injections help me to work and get on with my life in a fashion ..in the only i can .hope this helps x good luck ..you can only try .
I don't like taking pain killers so I use a herbal pillow that I put in the microwave and use it in a similar way to a hot water bottle and that helps. I am not sure where they sell the herbal pillow now cos I had it for ages.
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