Bone pain coping mechanisms tips please

coping with bone pain.Hi everyone, I don't have a diagnosis yet, waiting for 1st Rheumatology appointment as requested by neurologist, delayed due to Covid.

After admittance with Guillane Barre syndrome January after a viral infection which was very unpleasant and affected sensation and mobility.

anti Ro antibodies were positive too then and symptoms in line with lupus. Had what I'd call a big flare 6 years ago, same positive antibodies, GP messed up referral so never saw Rheumatology then.

Bone pain at the moment is not good, yesterday had a small hand bag on shoulder and been in agony since then. Scapula pain, shoulders, fingers, side of face feels numb. Also ankles, Hallux joints inflamed painful. Plus many other symptoms. Not trapped nerve, had CT for this and nothing.

Take Vit D as was identified as deficient had high dose for a while prescribed in hospital

But taking ibruprofen with no effect at all. Volterol, nothing.

Any tricks, tips? Making me miserable now

Thank you 😊

[Krazykat26]

Firstly gentle cyber 🤗to u Schol12

Sorry to hear you're hurting n miserable 💐

I'm gonna talk about pain relief..u said that you're taking ibuprofen n voltarol.they r both Nsaids n shouldn't be used together coz they contain the same ingredients.

R u taking paracetamol too? The reason I ask is that u can take different painkillers at different times..for instance u could take paracetamol n then in a couple of hours take the ibuprofen. U can only take 8 paracetamol in 24hrs..ibuprofen it's 6 in 24hrs. That way u r targeting the pain in different ways coz they work differently!!

If u would prefer to use voltarol..u could take couple of paracetamol n then apply voltarol after an hour or two.

Ive also found Weleda massage Balm very useful..it's homeopathic with rosemary, lavender n arnica in it! It's bit pricey but a little goes a very long way.

Hope some of this helps..be kind to yourself n if this doesn't work out u can always phone GP for stronger pain relief whilst you're waiting for rheumy appt 🌈😽😽xx

[Hidden in reply to Krazykat26]

Thank you 😊 and for the gentle hug 🤗

I applied Volterol at different time to ibruorofen I’m a nurse so the regular analgesics I know, was wondering re other meds or therapies, I will try the homeopathic you suggested 👌 and ring GP if gets too much . It grinds you down doesn’t it. I’m remote working due to this, shielding, work NHS have been great.

Take care xx

[Krazykat26 in reply to Hidden]

Oh right..that's cool that you're a nurse..so u know the ropes so to speak 😹 I trained as a nurse too ( psychiatry though) 😹

So r u using paracetamol as well?

Because of the meds I'm on I can't use Nsaids so I use paracetamol n I'm prescribed tramadol when paras don't work..u could go for co-codamol prescribed short term maybe?

Obviously you're very aware of possible dependence on both the tramadol n co-codamol..but if it's for the short term n only using it when u really need it? Why not? 🤷

Yes constant pain does grind us down for sure...it's taken me ages to get the meds I need to function!! 😹

It's good that you're working remotely but you've gotta take care of yourself too..be gentle n kind to yourself!!

Have u got someone to help u? I'm ok here..sheilded but with hubby around. 🌈😽😽Xx

[Hidden in reply to Krazykat26]

I’m a tissue viability nurse, wounds skin etc ! Yes paracetamol too, but not enough. May ring GP, I guess was holding off stronger but pains worse right now.

My husband is with me he’s great. I’m of the peri menopause age which people think must be the cause. May be adding- hormones ?

Thank you nice to chat to someone who understands x

[Krazykat26 in reply to Hidden]

We do have a lot in common..I too will hold off until pain gets unbearable..from what you're saying that time is now for u..I hope that GP is accomodating n prescribed u pain relief to tide u over till your rheumy appt

I was diagnosed with subacute cutaneous lupus (SCLE)in 2017 when I was 53. I'd had shingles in 2009 n I believe that's where my problems started..it took all that while to get a diagnosis n I was having major problems with peri-menopause too!! 🤯

With the SCLE u have ulcers on the palms of my hands n the soles of my feet..so your knowledge could come in very handy for me 😹🌈😽😽xx

[Hidden in reply to Krazykat26]

Yes similar indeed I’ve had shingles too. Stay in touch 🙌🏻

[Roarah]

I can not take NSAIDs for I am on dual blood thinners. Lidocaine is my only option pharmaceutically. However a form of CBT called ACT and daily exercise has helped me live well in spite of pain. I highly suggest asking if there is an acceptance and commitment therapists available to you.

[Hidden in reply to Roarah]

Thank you that’s very interesting

[LalSD]

We use Brufen retard 800mg twice a day(different than the ibuprofen you buy over the counter and its prescription only), morning and evening for a period say about 4 days. Black castor oil is a must for us for our knee pain and ankle and other joints, applied heat over it. It is a game changer. Having said that unless God sent a miracle to us through this therapy, it think it works and worked over 8 years without the steroids, although I came very close to using steroids and was insisted on it by the doctor. I personally refused steroids given my age at the time and now almost 47, I think i still need another 10 years if I can, without the additional medication. Hope this helps. Lx

[Paul_Howard Partner LUPUS UK in reply to LalSD]

Hi LalSD ,

It is not appropriate to provide advice relating to treatment on this site and I would request that you please refrain from doing this in the future.

Hidden , please always discuss any medications, supplements or complementary therapies with your doctor before starting them. They can then advise you of any potential adverse effects or interactions with other medications you may be taking. It is important to bear in mind that lupus is a very varied condition and what works for one person may not for another, or could be potentially harmful.

[LalSD in reply to Paul_Howard]

Hi Paul, you are right. My apologies. I am always over optimistic about this simple medication and think it may work for others. With best, L