Burning pain

[Garnacha]

Hi lovely people, I’m new(ish) to this site & have posted once before.

Briefly I’ve been diagnosed with psoriatic arthritis (11/11/20) however I’ve been in chronic pain for around 2 years, in February the consultant prescribed me with etorxicob 90mg & gave me a cortisone injection in my left elbow, in March I had another cortisone injection under ultrasound scan in my hamstring as well as my right shoulder, he also prescribed me with hydroxychloroquine, the pain in my elbow after the injection was horrendous but eased the pain slightly, the one in my shoulder seemed to work with no after pain but the hamstring one didn’t work at all. Obviously we all then went into “lockdown “, between April & July the pain got worse & worse, I saw my husbands chiropractor who tried exercises, electro therapy & acupuncture, none of which worked, by now the pain in my left elbow & hamstring was worse than ever, the chiropractor suggested an X-ray of my elbow (as this hadn’t been done by the consultant) to see if there was anything specific going on, the results were a spur on the end of my inside elbow with a build up of calcium & swelling on the outside of my elbow, he suggested a guided cortisone injection due to the pain I’d experienced previously & knew how terrified I was of having it again, it wasn’t until the actual injection that I found out they actually inject where the inflammation is, due to the spur & calcium build up I could only have the cortisone on the inside of my elbow but the dr said for me to get referred for the outside, tbh I’m terrified of doing that after my experience in February & with Christmas round the corner didn’t want to be in agony over Christmas, when I saw the consultant in November he said to stop taking the hydroxychloroquine & I was to start on methotrexate, within a couple of days I was in so much pain I rang my chemist to ask if it was ok to restart the hydroxychloroquine, he said it was fine but to let the consultant know, he said no problem & that he was going to increase the methotrexate from 15mg to 20mg. After about a week the hydroxychloroquine seemed to be helping but last week it seemed as if my whole body was in pain & I couldn’t go to work with severe pain in my left forearm & wrist as well as my knuckles & fingers , spoke to my gp last Friday who said it was a flare up & prescribed prednisolone for a week along with Omeprazole, the pain again eased slightly for a couple of days but has returned & seems to be getting worse, especially the terrible burning sensation down my left forearm & wrist & was sat with a bag of ice on it last night, I’m not sleeping due to the pain & run out of the prednisolone tonight. I’ve contacted the chemist who said a burning sensation is usually nerve pain & the dr should be able to give me something for this, however, the drs receptionist rang to say due to the complicated medication I’m on a clinician would have to ring me in the morning.

Sorry for the long winded war & peace but just wanted to explain the history & see if anyone else has experienced a burning sensation (along with all the other inflammation pain 🙄)

Thank you

Deb

[Hidden]

🥺oh G it’s not easy .. your RA is obviously active and the meds aren’t working for you. I too have been there. I get bad burning too I’ve been told it’s because the disease is active and swelling is compressing the nerves. Maybe a D-steroid injection may get you through Christmas. It’s one of the hardest parts of RA the trialling of drugs until you get “THE ONE” and the waiting in between.I’ve been through a few drugs come close to the one but not quite.

[Garnacha in reply to Hidden]

Aaw thank you for replying, it really helps to know there’s others experiencing similar problems, I’ll mention it to the clinician tomorrow but I wouldn’t hedge any bets on getting any injections before Christmas but, we live in hope, I hope you find THE ONE soon (& me) x

[helixhelix]

I have burning pains down my arms and legs from disc problems, squishing the nerves. Same as J1707 anything that touches on the nerves can hurt a long way away from where the actual inflammation/compression is.

I don’t want to take the neuropathic drugs so am managing so far with physio and stretching.

[Garnacha in reply to helixhelix]

Thank you, I’m not sure stretching or physio will help at the minute as even just using my arm / wrist for picking up a cup & the remote for example, just the usual every day stuff within a few hours it’s burning like mad, the ice on it last night & 2 cocodamol tablets eased it slightly, I’ve got 3 tea towels in the freezer ready 🙄 x

[helixhelix in reply to Garnacha]

🙁

I don’t stretch the hurty bits....but my neck and shoulders which is where the pinching is. But that’s me. If your pain is coming from somewhere else that won’t help you. It’s a horrible pain as you can’t get at it, so sympathy!

[Garnacha in reply to helixhelix]

Thank you, yes, initially it was my left elbow, left hamstring & right shoulder, over the last 4 weeks it’s gone to my left forearm, left shoulder, wrist knuckles & finger & the little finger on my right hand as well as my left toes & heel & hip, feel like saying shoot me now 😉 x

[Mmrr]

I get burning, numbness and twitching in my muscles and joints, usually when I'm not feeling so well. I suspect it is due to swelling which resolves when I feel a bit better. Gentle movement and ice helps.

[Garnacha in reply to Mmrr]

Thank you, yes I’m guessing from what others have said that it’s a sign of the disease being active & why I feel so unwell, the tea towels frozen plus 2 cocodamol definitely eased it a bit, hopefully it’ll settle down sooner than later x

[charisma]

Deb, it is very difficult in the first few months after starting meds. Best discussed with docs, but great you were prescribed more appropriate meds for PsA, at last.

We have mostly all experienced the ups and downs. It seems to me that you need a prescription for longer term (maybe one to two months) of Prednisolone to tide you over till the PsA drugs kick in.

Some of us do find that steroid injections won’t give much relief or it is very short term whilst others find injections better than oral tablets.

I am so sorry you are suffering as much as you obviously are, been in long drawn out excruciating pain myself too.

I hope the phone call will bring you some drug relief. Don’t minimise the suffering as we are sometimes tempted to do but tell it as it is.

I have frequently had to depend on my son too. Does not sit well with my determined independent spirit!

And do keep bringing updates since we all need to let out the pain, tension and sheer frustration and despair at times. x 🙂🎄

[Garnacha in reply to charisma]

Thank you, yes is so frustrating having to rely on other people for the simplest of tasks, my son had to cut up my food last week as the pain was so bad in my wrist, Im off work at the moment & have a load of presents to wrap & things to do ready for Christmas but can’t wrap or even think of what I need to get, do or prepare as I’m so tired I think from lack of sleep, I’m so independent too so it’s really strange & doesn’t sit right to just let my hubby & sons do most of it, have to bite my tongue when it’s not right 😂 x

[Gnarli in reply to Garnacha]

Hi Deb. No, nobody warns you about having to bite your tongue on top of everything else, do they? Perhaps having a word with your GP about something to help you sleep would be a good move? Your situation is bad enough without sleepless nights on the top and everything feels worse if you can't sleep. Wishing you well

[Garnacha in reply to Gnarli]

Thank you, I actually got 5 hours sleep last night, think a glass of red & 2 cocodamol helped 🥴 I emailed the consultants secretary at 6.30am this morning as my next appointment isn’t until 19/01/21 & thought there’s no way I can wait till then, had a reply he’s going to call me today sometime, I have private medical insurance but have used all my allowance so have been paying for X-rays, blood tests etc myself until my gp takes over my care fully, it does wind me up as I’ve worked all my life & get taxed on the medical insurance but at least I’m lucky enough to be able to access it. The clinician rang me this morning from my drs & as soon as I said the consultant was going to call me said she’d prescribe me stronger cocodamol but to see what the consultant says so just waiting on that at the moment x

[Gnarli in reply to Garnacha]

Your situation sounds hellish and I'm so sorry that you're going through it. I hope by now your consultant has got back to you with some help. Is there no way of going on your Rheumatologist's NHS list because having to pay for your tests must be prohibitively expensive? I can be of no use practically speaking but sending huge gentle virtual hugs

[Garnacha in reply to Gnarli]

Aaw thank you so much, at the moment I’m not sure how it works, the consultant said he’s asked for shared care but think the gp takes over once I’m settled, at this rate could be forever 😂 yes it’s gett very expensive it’s £191 for each round of blood tests & have a third lot on the 7th January, the X-ray was £110 & consultant £150, I also had to pay for the private prescription of methotrexate & there’s another prescription in the post. The consultant has just rung me & basically said that as today is only my 5th week of taking methotrexate they don’t normally see any improvements till at least week 8, he said as the prednisolone doesn’t seem to have helped & the burning sensation is nerve pain he’s sending a prescription to my drs for gabapentin, I’ve just spoken to the surgery who have it but apparently they don’t process prescriptions for 72 working hours! I did complain & said the drs clinician I spoke to this morning said to wait & see what the consultant says & how unfair it would be for me to now have to wait till Tuesday or Wednesday so they’re adding it to the list for Monday, fingers crossed I’ll have it then to provide some relief, glad I’ve got 3 tea towels on standby in the freezer 😂

[Summerrain14]

Oh Deb, such a horrid time for you. I really do hope you get that much needed call tomorrow. I am also hoping that if an injection is thought the best way forward you can have it before Christmas. Either way I just hope the route cause is found and treatment given ASAP. x

[Garnacha in reply to Summerrain14]

Thank you, me too, I’ll update everyone once I’ve had the call 🤞 you’re all so lovely & helpful x

[Niao]

I really hope you get something to help ASAP as you are really going through it! All the very best. Xxx

[Buckybri]

Hi , I see you have just been diagnosed with psoriatic arthritis, me to two days ago and I haven’t a clue what’s happened I started with mono arthritis in both knees and with mtx and biological meds seems to be controlling it but I feel like crap , then my fingers started to stiffen up and my thumb won’t bend so they say it’s psoriatic, is this brought on by the other arthritis? How does it all work

[Garnacha in reply to Buckybri]

Hi yes I too have psa (I’m slowly learning all the abbreviations 😁) I started with pain in my hamstring around 2 years ago that got so bad I can’t sit for long which affects working at my desk & driving (obviously sitting at home too) then returning from Manchester by train pulling a small suitcase developed severe pain in my left elbow, about 3 months later it felt like the muscle in my right arm was bruised & couldn’t lift my arm, saw the gp several times & physio who said it could be arthritis but all bloods came back fine with the exception of b12, I asked to be referred privately as I suddenly developed extremely dry eyes which are also a sign of arthritis, the consultant did more blood tests & an mri on my hamstring only & initially diagnosed chronic tondonitis, he gave me a cortisone injection in my elbow, & shoulder & I had a guided ultrasound injection in my hamstring, this didn’t do anything for that but they did help for a couple of weeks with my elbow & shoulder, he also prescribed me with etoricoxib & hydroxychloroquine, over the summer the pain came back much worse so I saw my hubbys chiropractor who tried exercises, electro therapy & acupuncture none of which worked, he arranged for me to actually have an X-ray on my elbow which showed changes to the tendonosis so I had a guided cortisone injection, the dr said a spur had developed on the inside of my elbow as well as a build up of calcium, he said that I also had inflammation on my outer elbow & to arrange for another injection there, tbh I haven’t as last time I was in agony for around 3 days after, due to my left elbow being so painful I was using my right arm more which then got badly inflamed again that I was crying with the pain, saw the consultant on the 11/11/20 who asked if I had psoriasis, I said I do on my scalp & around my hairline & that my mother has it & my son has it really bad on his body, so much so he’s had to have light therapy to try & clear it up, he examined my scalp & said 100% I’ve got psoriasis which confirmed I had psoriatic arthritis, he then put me on mtx & said to stop taking the hydroxychloroquine, however, within a couple of days I was in so much pain I contacted him & was told to start taking it again, the pain eased slightly but then came back with a vengeance, the pain seems to have spread down my left forearm, wrist, knuckles & fingers as well as my right forearm, my heel, toes, knee & hip. My gp prescribed me with prednisolone steroids for a week which helped for a few days but then the pain came back including a severe burning sensation in my left forearm, apparently this is nerve pain & im waiting for a prescription for gabapentin to be issued from my gp. Psa is horrible & never would I have thought that the initial pain would develop into all this chronic pain, I’m still struggling to believe it, I’ve been off work since 10/12/20 due to the pain & not sleeping & I’ve literally got no energy to do or think anything which is really frustrating with Christmas next week, I’ve got so much that needs doing but really can’t be bothered, I keep telling myself come on, shake it off & get on with it, but it’s easier said than done. From what I understand from one of the leaflets given to me, you can have psa but may only have psoriasis or only have the arthritis, some people can have both & one can be worse than the other, for me I’m guessing I’ve got low psoriasis symptoms but high arthritis symptoms, I hope this makes sense. It’s really hard trying to get your head around it all, I’m so glad I’ve found this site as everyone is so helpful. Hope what I’ve put helps too & that you start feeling better soon x

[Buckybri]

It’s weird because I am itching and getting hot flashes

[Garnacha in reply to Buckybri]

Yes I get quite itchy mainly on my arms, my gp prescribed me with some cream to use a few years ago but it didn’t help & was horrible & oily, I did have some white patches on my hands too that I put down to too much sun & have been putting solaraze on which was prescribed for keratosis on my leg & assumed it was similar on my hands, since being diagnosed I think the patches on my hands are actually psoriasis, I believe that mtx can also cause itching x

[Brychni]

yep! Burning, pulling sensations in between joints, like a line for shoulder, elbow, wrist and down the middle finger. So far mainly on one side of my body (have this in my leg too) but gradually the left side joining in too.

[Garnacha in reply to Brychni]

Aaw so sorry you’re experiencing this too, the consultant prescribed me with gabapentin for what he said was nerve pain probably caused by the inflammation pressing down on a nerve, initially 100mg 3 x a day for a week increasing to 200mg 3 x a day, this didn’t do much so when I saw the rheumatologist last week he said to increase one of the doses in the day to 300mg, if this doesn’t work try another 300mg to one of the doses so I’d be on 1500mg a day, increasing the dose to 1200mg has helped a bit but still getting slight burning, if it doesn’t stop by next week I’m going to have to increase the dose so taking 1500mg a day, not sure if gabapentin will be of any help to you but it needs to be prescribed by your rheumatologist or consultant I think as it’s a controlled drug x