Pain that is not inflammatory, how did you deal w... - LUPUS UK

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Pain that is not inflammatory, how did you deal with it? What did your dr recommend?

Sandy1212 profile image
Sandy1212

Hi all!

So in general i am doing okay. Unfortunately, no matter how better I get my hands, wrists, ankle and feet are in CONSTANT pain. I type for my job, have to travel to work and I am a part-time student (luckily right now is online) which just make it so much worse.

I use compression gloves, muscle pain relief cream and hot and cold compresses. I have told my rheumy and i said i didnt want to be on painkillers (they’ve hardly ever helped as much, i take enough pills as it is and it doesn’t address the problem!). They didn’t find any inflammation or damage in a ultrasound or an x-ray and im due to have an MRI scan to see if they missed anything. When I asked what is next step if that also shows nothing, he went on to say that I should just exercise and try meditating to help deal with the fact im in pain...i already exercise and it helps my other joints/muscles just not these ones. I personally thought they would suggest like a pain clinic or physio or further tests! I feel as if i am not stressing my pain enough🤦🏽‍♀️

Has anyone had any experience with how their non-inflammatory pain was dealt with? Any further advice? And does anyone know of any cold/hot gloves and sock products?

36 Replies

Sounds to me like it could be nerve pain.i get it in my hands and feet and I'm prescribed pregabalin. If it's any consolation I take about 25 tablets a day which i dont want to take them all either but why suffer when there is help available . I also wear Compression gloves

Thanks for posting! I was prescribed amitriptyline when i had shingles before and it didn’t help my joint/muscle pain (helped the shingle pain though!) so it made me wonder whether it was nerve pain, but i guess it may be a ‘different painkillers for different people’ sort of thing. That is a lot of tablets, sorry you have to take so much😥 if it’s a long term tablet i would be more inclined to take it but 95% of the time they tell me just to take over the counter painkillers even though i tell them im in pain all the time

You cant do that with pregabalin as it's a taper drug.i dont get swelling in my joint just pain and it took me several reminders to my rheumatologist to get some help but the pregabalin works well for me and 95% of the time I'm pain free unless I over do it like I did yesterday 🙄.sun exposure causes pain in my joints too which was what happened yesterday as I met up with my daughter and grandchildren outside for the first time since aug. It is what it is and at the end of the day they help me function better improving my quality of life. X

Spanielmadlady, How was the picnic? How were the grandchildren? I am sure that you are feeling the effects, but hope that you all made some glorious memories.

Healing hugs.

Have they no idea what is causing the pain - could it be osteoarthritis? Although I was told MY hand pain was OA about 15 years ago and there is no sign of it now - it was actually probably tenosynovitis due to polymyalgia rheumatica. For some reason, when I get hand pain in a flare the ache at the base of my thumbs/in my wrists does improve in response to using Flexiseq which is designed for OA in knees - it is sort of WD40 for human joints! No idea why it should help. A lot of ladies who tried it for knee pain found their sore hands improved - you apply it to your kness and then sit for 10 mins for it to sink in so you don't wash your hands for a while and they realised it had a good effect on their hands too as a result.

flexiseq.com/

There are lots of cold products - just google it. Raynauds sites often have info about the warm sort. A friend of mine got the physio dept to recommend a wax hand bath after she tried that in the physio dept and found how much it helped her sore hands

Sandy1212 profile image
Sandy1212 in reply to PMRpro

I think they ruled out OA as they saw no signs of damage. Thank you! I will have a look at flexiseq☺️

Ohhh good question & responses....been having hand pain for a while & really flaring at the moment....will be googling suggestions made so far.... 🤗☺ it is maddening....& painful....Just told to rest my hand....not easy.... pm advice & spanishml sounfs great....ml

Sandy1212 profile image
Sandy1212 in reply to maggielee

Sorry to hear youre flaring maggielie! Hopefully you find something thst works for you! Wishing you future relief xxx

I have RA not lupus and have constant wrist, knee, hip and other joint pain. Best relief for me is heat, compression, support, rest and avoidance of acidic and tannin loaded foods. Failing that I use codeine. I have a good massage tool which when used is a distraction from the pain at least. I rate my pain on a 1-10 basis with 10 being high. Today I rate my wrists as 2, knees 2 and hips 2. I allow myself pain relief if one area goes above 3 even whilst the others are at 2 so that the total pain scale stays at 7. I’m not rigid about this but I find it helps me deal with pain knowing when I’ve reached my limit of endurance. 🙂

Hi Sandy1212, I’m having similar issues at present. I have no inflammatory markers or swelling but my elbows, wrists, hands, hips, knees and ankle joint are painful and I’m struggling to get about to do day to day things.

I’m new to lupus myself and have been on Hydroxychloraquine for over 6 months now, it’s really helped with my fatigue but I’m still experiencing pain. Tramadol and Co-codamol don’t touch it, I’ve tried different anti-flammatories and they’ve not worked. I’m also on Amitriptyline for headaches, which has helped the headaches but not the joint pain.

So really interested in finding another solution which may help.

Sandy1212 profile image
Sandy1212 in reply to Button84

Hi button84, i am on hydroxy too but only just start a couple months ago. So sorry you are also experiencing the same as I😥 i hope this post and your own research helps you! X

Button84 profile image
Button84 in reply to Sandy1212

I think my symptoms have been exacerbated due to being in the sun for a few hours. To help combat that I’ve got factor 50 sun screen and staying out of the sun when it’s at its highest strength, will take some lifestyle adjustments as I have kids and our favourite time of the year is summer and being on the beach.

Everything is a trail at the moment to see what my body can cope with. Xxx

Maxi dress, big sun hat, skin cooling lotion and caution allowed me a day in the sun with my grandchildren. 😎

I have the same agonising pain. At present I'm using wrist and thumb splinted supports but as for medication nothing has worked for me even steroid injections.The best cream by far is the high strength CBD cream.

I have found it great. I use it three times daily before I put the splint straps on as for my other joints I massage it in as is effective

I buy the cream from Amazon and the tub lasts a good 2-3 months

Keep me updated

Keep smiling🙂🙂

Sandy1212 profile image
Sandy1212 in reply to Tappie

Thanks Tappie! Will look into CBD cream☺️

I use black castor oil and apply heat (water bottle) or heat up a towel soaked with the oil in the microwave only few seconds and compress it on the joints, wrists, ankles and apply around toes and fingers. I cover it with cling film sometimes. For me, this has been a life saver. Lx

Sandy1212 profile image
Sandy1212 in reply to LalSD

Thank you LalSD! Glad it worked so well for you! X

stillsdisease profile image
stillsdisease in reply to LalSD

Super tip thanks I’ll try that too 🙂

Sorry to hear you are struggling with pain.On my experience if you have lupus and manage not to take tablet form

Painkillers you are doing exceptionally well.

At times most of us cannot get out bed and lead a normal life. I am not clinically qualified so I cannot advise you but what is important is quality of life. I’ve experienced pain that needs ketamine and morphine.

You get to a point where you make a decision, quality of life or no painkillers.

Life is short and the misery of pain can last years. Painkillers prescribed for a reason and can make the difference. Explain how pain is affecting your quality of life to your consultants. They will guide you. Trust them

I don’t like taking tablets but to me it’s a no brainer, my life is so much better and happier with them and other people can see that too. Hope that makes sense.

Best wishes.

Sandy1212 profile image
Sandy1212 in reply to Smudge4465

Hi Smudge4465, thank you for your insight! I think it is something that ive been very cautious about as they previously put me on methotrexate on top of azathioprine to hopefully help with the pain but that landed me in hospital with shingles in january😪 after that it left me a little shaken about them prescribing me things! I guess unfortunately it is a trial and error game but id like them to be a bit more mindful about their choices in case of reactions, maybe then i wouldnt be so opposed to a regular painkiller! Your post has assured me more so thank you☺️

Smudge4465 profile image
Smudge4465 in reply to Sandy1212

I will message you privately as we have a lot more in common than you are aware.It’s good to encourage each other with our positive experiences

Completely agree, upon diagnosis with Stills I was taking 25 tankers a day for years and that allowed me to have a reasonable life. 🙂

HiI use hand splints when my hands are bad. I wear them in bed as curtail movement. I also use elastic gloves. I have gloves from Amazon that you heat up in the microwave, look like Minnie Mouse and heat does not last long. I see an OT who has given me exercises.

I now have an adapted keyboard which is fab and a mouse which I am getting used to.

No answers for ankles or elbows but if you find one let me know.

Sandy1212 profile image
Sandy1212 in reply to Hamptons

Thank you Hamptons! And will do X

Yes wearing wrist splints in bed helps me to wake up with less pain too.🙂

Hi … if you have access to a swimming pool try aqua fit or aqua therapy .. I teach both and do it myself it certainly helps. A lot of GPS are behind water therapy and some of them give vouchers for (doctors where I live give patients 6 vouchers) aqua. There are a lot of Ladies in my groups that have a whole raft of medical problems ranging from hand feet hip pain through to back problems - they are like different people once in the water with their ability to move. Water supports your body but the resistance is gentle and aids movement.

Give it a try if you can … I’m sure you will not be disappointed.

🤗

Sandy1212 profile image
Sandy1212 in reply to Mollymaid

Thank you Mollymaid, i will definitely have a look into that! X

I found gentle exercise helped a lot - both physically and mentally. Swimming (as mentioned above) is brilliant. It gives the joints a gentle workout, stimulates parts of your brain, great cardio and gives an overall feel good factor that you've done something.

I also found CBD oil seemed to work. I've posted a thread on this here somewhere. I'll try and pull it out for you. But in short, I wasn't in the slightest bit a believer in this stuff. But having tried it for a while, I did find myself feeling a lot less pain, have a lot more enrgy. BUT please DO speak with your Dr and consultant if you do want to try it. You may be taking medication that may react to CBD oils.

Sounds to me like you need to see an OT. I have custom made resting splints to use when I am in a lot of pain - as well as the neoprene ones with velcro that you can wear either resting or working. The plastic splints - which are made from a sheet of plastic softened and moulded to shape - work like a dream, even with no painkillers. In fact - when my wrist/hand pain is bad - they are the only thing that works - and like you I spend a lot of time typing at a computer. Why not ask your GP or Rheumatologist to refer you to an occupational therapist - they are worth their weight in gold!

I would t. E with out my moulded splints either ☺️

Thanks winterswimmer i will definitely bring that to them!

Access to Work grant assessed me at work and so work paid for my keyboard which has made typing so much easier. Been working on a laptop at home this week and really noticed the impact on my hands and wrists. My OT has been a life changer and thanks to Covid I have kept her longer. She gave me such good advice.

Exercise Referral by a GP helped me too, I loved the aqua aerobics class felt very fit and able even if it was the medical group. Sadly, the sessions are in the day only so I have not been able to continue with that. But, if you are Uni you maybe able to access them. Talk to your GP.

Sandy1212 profile image
Sandy1212 in reply to Hamptons

Thank you for the suggestion! X

Good suggestions.

I agreed with use of an adapted hand mouse or foot mouse if you are using computer a lot as sounds you are. Also speech to text software (eg, “dragon naturally speaking”) helped me saty in work longer. Foot rest and the whole ergonomic set up, even if you invest items for yourself. Blessings

Sandy1212 profile image
Sandy1212 in reply to harmony2

Ive actually got all of these already😅 definitely helpful but unfortunately still not enough

harmony2 profile image
harmony2 in reply to Sandy1212

Uggh! I’m so sorry. Sounds awful. You must be exhausted from the constancy of the pain.

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