Coping with joint pain: hi all, I was wondering is... - LUPUS UK

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Coping with joint pain

NewToHats profile image
29 Replies

hi all,

I was wondering is anyone had good tips for dealing with joint pain. Mainly hands, wrists,, feet, ankles and elbows. Elbow pain sometimes wakes me up in the night and walking down the stairs in the morning can be agony. I have found hot shower 1st thing is essential and takes the edge off but if I’m honest the pain is constant really. Are there stretches, supplements, rubs, life hacks that others have found helpful? I’m just completing 4 months on hydroxychloriquine and am due to have ultrasound on hands and feet in Nov as the hydro has helped most symptoms but not really the joint pain yet. I do take ibuprofen but I don’t like taking it too much as I already have nausea issues and it makes it worse.

thanks in advance.

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NewToHats
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29 Replies
Quuen profile image
Quuen

Hello. I'm going through the same thing. I tend to find it doesn't fully go away but at times it will be tolerable. Try to stay warm and maybe use hot water bottles. I've started drinking more ginger tea and any food that has anti inflammation properties. Move as much as you can without tiring yourself out. Keep the joints mobile is very important. Maybe grab a tennis ball for your hands and feet to do gentle movement. Hope this helps. Good luck on your journey. ❤️

NewToHats profile image
NewToHats in reply toQuuen

I need to look at my diet again. I find it slips when I’m suffering more as my hands can’t manage so much meal prep and I end up eating more processed stuff.

Will try to work on that. Thanks 😊

Turquoise-1 profile image
Turquoise-1

Hi @NewToHats

Ibuprofen 10% Gel (Prescription Only Medicine), gives me relief along with various other prescribed analgesics.

I find this gel really effective, but prefer to warm it before use otherwise it’s a bit cold when applied! 🥶 ….Stand it in a jug/mug/container of warm water, run it under hot tap or hold it for a while.

(I have Lupus SLE, OA neck, spine & knees + lots of other spinal & orthopaedic problems).

The topical gel was previously called Fenbid Forte. You can buy several different similar ones from the supermarket or chemist but they contain a much lower %of Ibuprofen so aren’t as powerful.

My hubby has severe RA & he swears by it; He also wears knee, wrist & ankle supports when he’s at work to support his joints as advised by his Consultant Rheumatologist. He rubs the gel in prior to putting them on. They’re neoprene so keep the joint warm & contain copper (Dr Arthritis is the make), machine washable & last a long time.

Interestingly, last week when I saw my Rheum Consultant she recommended good, old-fashioned Wheat Bags & also Tiger Balm to rub into sore joints, hurting ‘bits’ & aching fingers. I’ve not yet tried the Tiger Balm though…..She said it has a very strong smell.

Like you I use hot water bottles but also have a wraparound electric heat pad which is very comforting & soothing on my back, neck & shoulders, (I don’t use it at the same time as the hot water bottles though!).

Also, I have gel packs which can be frozen for use as an ice-pack or warmed in the microwave. These are very good because they are pliable when warm & have a soft, fleecy cover one side/mesh the other with elastic straps - wrap them around elbow, wrist, knee etc

I’ve had 40+ years of physio (mainly NHS), do it most days at home, need to keep the joints flexible/moving & the ligaments, tendons & muscles around the joint as strong as possible.

Physio (in my opinion) is excellent & really does help but you have to be consistent with doing it even if it’s hard. You won’t get the benefit if you don’t keep it up, plus it can painful & tiring especially when you’re not feeling great. Causing more pain isn’t the idea obviously, that’s where a good, physio can advise what not to do & when to stop

Your GP should be able to refer you, assuming you’re able to attend in person, I think it’s very worthwhile. Some NHS Physios will arrange a telephone appointment.

All the best 🙂

NewToHats profile image
NewToHats in reply toTurquoise-1

I had honestly not thought if tiger balm (it’s amazing for insect bites) or topical ibuprofen. Thanks for all the tips, very helpful.

Turquoise-1 profile image
Turquoise-1 in reply toNewToHats

You’re most welcome 🤗

it’s only because I’ve had orthopaedic problems since the age of 14 (now 58), that I know about so many treatments plus I’m a retired Paramedic & former Dental Nurse).

I omitted to say that I have also used a TENS machine for decades too! Physio recommend it many, many years ago as one of their treatments is ‘Interferential Therapy’ which is similar to a very large TENS machine.

I prefer a Dual Lead TENS machine, (means I can attach 4 pads in 2 different areas, eg shoulder/upper back & also lower back), plus I prefer the larger, reusable electrode pads which are readily available online; I find the small, square pads not as effective. (You mustn’t put the pads directly over a joint/bone though, only on soft, fleshy areas)…..

TENS won’t cure an underlying problem but the electrical impulses stimulate blood flow/oxygen supply around the joint & the pulsating sensations from the device help to distract my mind from concentrating on the pain. Sometimes I wear mine all day & switch it on every so often to have 15 minute blasts …..TENS is just another ‘tool’ in my pain relief kit!

I’ve also had loads of Acupuncture done by NHS Physios - many are trained in it, but I didn’t find it effective & eventually could no longer tolerate the needles as they became too painful…I’m not the least bit squeamish, worried, fazed or anxious about having any treatments, (particularly after all I’ve seen & done at work!), but I simply began to find those fine, teeny-tiny Acupuncture needles strategically inserted in various locations from head to toe over my body, unbearable! 😣

Senior Physio said that this often happens to bodies which are trying to cope with multiple sources of pain, whereas other people who are experiencing eg, one knee pain, are quite often able to achieve beneficial results.

We’re all different though & what works for one, may not work for another!

Joint injections have been hit & miss for me, sometimes fantastic relief although not long-lasting, & other times no relief at all….& now, since Anaphylaxis following Steroid injection for Lupus, I can’t have steroids at all 😂

I hated Chiropractor - far too harsh, but benefited from Osteopathy & also regular deep, intense Aromatherapy Massage. As with any area of medicine or complimentary therapy, some practitioners are way better than others! Expense ££££s is a consideration too of course 😳

I swim & use Hydrotherapy Pool too but it’s all about what suits you x

Tinkabell555 profile image
Tinkabell555

Hi I have SLE and my joints were agony and really swollen when I was first diagnosed but since taking prednisolone along with hydroxy and later azathioprione it really helped taken it away. Sometimes I have no pain at all other times just mild pain so it is possible you will be pain free again if you find the right balance of meds for you! Good luck

NewToHats profile image
NewToHats in reply toTinkabell555

Thanks, they are talking about maybe adding another agent depending on my ultrasound results.

dg70 profile image
dg70

To sleep at night I take gabapentin which knocks me out just about till morning. I was waking up 10 times or more a night with joint pain and its stopped that. As it makes me dizzy I don't take it in the daytime. If pain is bad in the day I take codeine and paracetamol but I can only take one a day because of nausea issues. Deep heat or tiger balm takes the edge of some joint pain when I don't want or can't take medication. I have a plug in heat pad for my back when its bad, its wonderful. See your gp and see what they can do. There are many medications for joint pain/neuropathy. If one doesn't work for you, try another.

NewToHats profile image
NewToHats in reply todg70

Thanks, definitely going to try more heat pads and tiger balm. Will also make an appointment with the GP to see if I can get some physio support as find Im only really able to do swimming and gentle walking.

dg70 profile image
dg70 in reply toNewToHats

I have just started physio curtesy of the NHS. They have a hydrotherapy pool which hopefully I'll get to try soon. It's a case of using all the methods available to fight pain. Definitely a plug in heat pad helps loads and it's cheaper and gives constant heat than the stick on one use ones. Push your gp or rheumy to get you more help. Hope all goes well.

M0wnt profile image
M0wnt

Hi,

I don’t get out of bed until tablets have kicked in. Then I don’t do anything that is repetitive on a daily basis or I will get inflammation in that joint. I am also on hydroxychloroquine which has taken the edge off, but then it is all about activity management for me, and the right pain relief. I am also on Venlafaxine, gabapentin and co-codamol.

Hope you get some relief. Rest is key and nothing repetitive.

Munt.x

NewToHats profile image
NewToHats in reply toM0wnt

Sadly I have to get up very early for work and have a young kid so waiting for meds to kick in not really possible. Having said that I could take them as soon as I wake rather than waiting till after my shower. Every little helps right?

Hadn’t appreciated not doing repetitive things. That’s a good point, will bear it in mind.

M0wnt profile image
M0wnt in reply toNewToHats

Yes I keep mine next to my bed and have alarms on phone to make sure it’s regularly. My hubby has now taken on school duties as I have had to give work up in the last year, and my husband had to look after me for a few months so had to leave his job and start his own business so that he has more flexibility to help at home.

I have suffered for years but ignored the pain, carried on pushing on lots of medication until I got to the point I just never recovered and I got worse and worse. So I had to leave the NHS. I am currently not working as just trying to walk the dog and do some washing on good days. I have to rest a lot, but also need gentle movement so walk outdoors with crutches or I wouldn’t get far.

Meds first thing though does help.

chrisj profile image
chrisj

I have codeine. I can't take antiflammatories so a rheumatologist prescibed codeine. I try not to take it but use gentle exercising to help with joint pain.

I have wide spread OA and severe arthritis in one knee, needed a steroid injection at the beginning of this year it was so bad. The steroid has enabled me to move round the house more comfortably. GP said I needed a replacement but if I can find other ways to deal with the joint thats what I'm doing. I don't want to face surgery if I can help it.

I bought a floor pedal bike and if my knee's painful I exercise on that. I can sit comfortably and pedal, it works. Hands and wrist joints I massage gently myself, thumb bases are a nuisance but again gentle massage. Main thing is to try and move joints. A physio told me this year that movement helps produce the fluid that joints need.

I also take gabapentin regularly at night, just one capsule to help with nerve pain.

NewToHats profile image
NewToHats in reply tochrisj

Keeping active even in bad days is something I need to work on. Especially as I have heavy work days and find myself exhausted the day after. I need to work on that as I’m sure it would help, thanks

chrisj profile image
chrisj in reply toNewToHats

I didn't realise you worked. It can't be easy. Have you been to a pain management clinic? I found that useful, pre pandemic for 6 weeks.

Turquoise-1 profile image
Turquoise-1 in reply tochrisj

Hi chrisj

I agree that Pain Management Clinic is a good suggestion for NewToHats .

I recently had several appointments at a Community Pain Clinic, saw a fantastic female Advanced Physio Practitioner who I ‘gelled’ with which always makes a difference! A Psychologist paid a brief visit in one session, but I don’t have much time for them in general, probably because after I left the Ambulance Service I retrained as a Person Centred Counsellor/Psychotherapist, so I don’t always see eye to eye with them & their ideologies.

I did a Chronic Pain Course about 15 years ago (as a patient) at a Rheumatology Hospital. It was called IMPACT then, was for 6 weeks & was quite beneficial. It was run by a multi-disciplinary team consisting of Physios, Rheumatologists who dealt with the medication side of things regardless of whether or not the person had RA, Lupus or any other autoimmune disease & a Psychologist who did Mindfulness based CBT.

I’m not a fan of CBT but can pick out bits useful to me, plus I was trained in pure Mindfulness 20+ years ago, long before it became the diluted version it is today, so was already familiar with that.

However, from a reading list of helpful recommendations, I came across a book by Jon Kabat-Zinn called ‘Full Catastrophe Living,’ which I read to this day & listen to his CDs on my iPod. There are many You-Tube videos of him - he’s a guru in his field in my opinion.

The Community Chronic Pain Clinic is a scaled down version of IMPACT & is one-to-one rather than in a group.

It’s definitely worth asking about 🙂

Graystar profile image
Graystar

Sorry to hear about your joint pain, I use a heat pad in addition to the hot shower/bath. I also wear fingerless gloves on my hands as I’ve had a few broken bones in my hands, so they can be particularly painful. I don’t use OTC meds as I can’t take them anymore. Exercise does help but also overdoing exercise can make things worse so it’s about striking a balance. I have also tried using ice packs on my hands, knees and feet, and although that reduces inflammation and swelling, for me it doesn’t make it any less painful but it may work for you. Usually it’s a case of finding what works best for you but keep moving no matter how painful it is, even stretching and some yoga will help on those days when you can’t do much else.

NewToHats profile image
NewToHats in reply toGraystar

Thanks, I had wondered about fingerless gloves. Do the ‘medical ones’ work better? Or would any old knitted ones work just as well?

Graystar profile image
Graystar in reply toNewToHats

I use the knitted ones, I haven’t tried the medical ones to be honest. My daughter is buying me a “medical” hand massager for Christmas which I’m hoping will help too! I’ve had lots of broken bones in my hands, so that seems to add to the pain and swelling. Hope something helps you!

Turquoise-1 profile image
Turquoise-1 in reply toNewToHats

NewToHats

It’s me again 😂….

Both my hubby & I wear fingerless compression gloves, they’re quite thin but I think they help a lot (I have Raynaud’s). Wear them even when in the supermarket, using iPad/phone, indoors/outdoors & also underneath normal gloves when very cold whilst walking. Sent for them off Amazon & have several pairs of small ones which fit me perfectly 🧤🧤

What a good post you’ve started here, I’m really enjoying reading all the fab replies 🤓

KnitSewPurl profile image
KnitSewPurl

Hi ,Been an SLE suffer for over 12years now the first thing I did was checked my diet and weeded out Garlic , mushrooms. What they say abt anti inflammatory foods like garlic it makes it worst for lupus sufferers . It makes our auto immune to play up more. Any form of great anti inflammatory food stay away from it especially Alfalfa. And any form of Super Foods , like Quinoa. While some can tolerate not all can. It can attack our immune system and make it worst which is why we have pain in our joint and muscles.

As for me : I found out I am not able to take Gluten,Oats Barley, and Dairy plus (Garlic and mushrooms)these 2 in my earlier stages of my SLE diagnoses. The earlier 4 is recently. So at the moment I have avoided most super food if possible and eating fresh organic food and vegetables. My body seem to tolerate it better minimum flares and feel better and sleeping better too. I even have more energy to do exercises, bake , sew, cook, do the normal household chores. Which is not like me . Which normally I am very tired and worn out if I do 2thing in the day. Yes , I space out my activity in the day and week.

The other thing , is keeping warm , make sure you wear layers and your home is warm on colder days. Do not let yourself get cold .try and keep your feet warm by wearing socks or even double socks if it needed. Wear tights if needs while it is not the weather for it if you are cold wear it. It is there to keep you warm .

Treetop33 profile image
Treetop33 in reply toKnitSewPurl

There's nothing wrong with anti-inflammatory foods, but anything that boosts the immune system (like garlic) might be a problem for some.

Paprika60 profile image
Paprika60

I use magnetic balls on acupressure points. I put them on the painful or stiff areas. Great help with circulation too. I could not function well without them. One can get it on line, Dongbang magnetic ball acupressure point plasters. As I refuse to take extra medication, this is the best solution. I used to have acupuncture therapy twice a week but I can do this at home on my own every day. It works in the same way as those wrist bands do for stiff joints.

To make sure I am accurate with the positions, I check the meridian points on internet and learn as I go. And hot water bottle helps too in the evening after dinner when I don't have to be active and move around much. Hope you get better!

Tessie62 profile image
Tessie62

Hi NewToHats!

I'm sorry to hear you're dealing with achy joints. I too feel pain in the same areas. Currently my left wrist, ribs, and back. I can't take over the counter pain relievers as it incites my ulcer. I do however, take Tramadol. The only thing that helps with my back is Hydrocodone. But, taking that adds to chronic constipation issue. I'd ask for a trial period of Tramadol. See if that doesn't help curve the pain. I was able to cut back on mine before I really had a chance to up the dosage. It seems only after a few weeks of starting Hydroxychloroquine the pain has ceased somewhat. I expect it can only get better from here on out with the pain. Have you noticed a difference on the Hydroxy at all yet? I'm still working full time and I think that's a life safer for me as far as not fixating on my pain. Stretching every morning after an hour of being up helps me a great deal too. I also use stick on pain pads for the days I can barely look past my nose from the pain. I also have a cabinet of aids I will use. For instance, a wrist wrap, knew compression sleeve, elbow compression sleeve, etc., etc.. I also do physical therapy. But truthfully I felt it exacerbated my back pain instead of curb it.

I do hope you feel better soon. Let me know if any of my suggestion help. Especially the Tramadol. That's been a huge help for me. Albeit, I had to up my dosing as the meager 1 to two a day wasn't enough on my higher pain days.

I'm sending a warm hug your way,

~Terri

Treetop33 profile image
Treetop33

I've never been given any effective pain relief, and since mine is low-level and simmering I've not gone for anything strong. That said, I do wake up from stiffness and pain, and it would be great to have a solution. I'm going to try and access cannabis oil from a registered provider when I get some time.

Tessie62 profile image
Tessie62 in reply toTreetop33

I would definitely opt for a more natural approach but my employer doesn't allow it. We have random drug test. If I were to fail, I'd lose my job. Tramadol for every day use, 2 @ 50mg a day or as needed is all that's required.

Sashappy profile image
Sashappy

I cannot tolerate ibuprofen or any anti-inflammatories. I have multiple medical and mobility issues and cannot move without taking Lynlor 10mg every morning up to 4 times a day. This is also known as Oxycodone. I find it doesn't make me sleepy or unbalanced like other high end painkillers. The strength can be increased if necessary via your doctor's surgery approval. I use to take the hot bats which helped short term but cannot get in and out of the bath anymore. I top up with 2 x paracetamol up to 4 x a day but no more than 9 in any 24 hours. At my worst I have to top up again with liquid oramoph just to get out of my bed or move at all. Pregbalin is another med I can top up with and depending how bad I am the dosage is adjusted for my needs. I have never got on with tramadol, amitriptyline or morphine patches as doesn't stop the pain just makes me dizzy and unbalanced resulting in falls. I also take Hydroxychloroquine for lupus. I get more movement after my lynlor meds in the morning but gradually struggle to get around in the afternoon/ evening. Hope you find a solution. I find my best friend is my hot water bottle. Good luck.

MusicalFurbaby profile image
MusicalFurbaby

Yeah, the hydroxy didn’t help with my joint pain either. Warm showers and baths with epsom salts are good. Turmeric helps take the edge off my pain, and it’s a good option if you can’t do NDSAIDS. Tip: get a good quality turmeric and take it with pepper for absorption.

Get plenty of rest and be nice to yourself when the nasty joint pain flares. Oh, and drink water!

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