hello! hopefully i can describe clearly and succinctly what is going on... not always easy for me. my lower back has rumbled at me since i was a young person with cute swayback to fierce sciatica working on an assembly line in my 20s to not moving enough while playing music hunched over a fiddle and doing music research over dusty old books hours at a time since then. and now, some kind of multi form arthritis and vascular involvement making it tricky to be upright, so lots of time laying down, altho I'm better at changing position often, and i have targeted intentional exercises. but! just over three weeks ago, covid came in the house, and i got it. my husband, who got it first had two days of awful, and pushed through the other days. I'm immunosuppressed from medicine i take, and after i tested positive, contacted the clinical decision office to get anti viral medication. i tested positive for nineteen days, and have just today tested negative for three days in a row. I'm still coughing, and fevers still crop up a couple times a day. that's something that happens with me anyway. having high fevers and more aches than usually, i haven't been keeping up with my regime, and i can tell. I've managed to restart on mobility, but not execute yet (oh, the coughing).
my main problem right now is that i was putting some hip pain/ sacro pain lower down on my list because my right knee is locking and painful and i have had some other back issues that needed speedier attention, and so far everyone i asked said, oh, it's likely knock on from your knee, your back, your spine, it will clear up when we get those sorted. but the process and progress has been slow. unofficially, there's an idea that i have hip bursitis, cause from poor gait with the wobbly knee.
ugh. horrible run on sentences. my main problem is that i now have pain in my sacro whatsit sliding down both hips, and shooting down over the tops of both thighs. it feels like tooth cavity pain, hit a nerve pain, not sore muscles. and I've never had sciatica on both sides before. I'd not be surprised if it's related to being fevered and in bed and isolated for three weeks, but knowing a possible cause doesn't stop the pain. i have a lot of pain management techniques, mental ones, rewiring type things, but also, codeine and tramadol and nefopam and aspirin. the only thing that worked to calm the cough was codeine and antihistamines, so i was using those more regularly than usual. but this pain was even on when a full whack was at its prime. i was given a tens machine to use for sciatic nerve stuff, and even tho i don't think this was that i did try. i was able to get about 20 mins of pain relief with an hour of jolts. definitely not the same.
when i called 111 because, Saturday afternoon, i could not take anymore, three days even more broken sleep, coughing was like shaking a feverish ragdoll, i was basically told there would be no point going in then. there's be no specialist to see me, and they wouldn't be able to prescribe anything above what i was taking already. so, tomorrow, i call. somebody. and plead. and try not to give up.
do any of the signs and symptoms seem familiar? not looking for a diagnosis, obviously, but, have you had experience with this? what helps you with long time acute pain that doesn't muffle? also, i don't know if it's coming through, but this is longer than succinct, and that's because this is in fact a rant as well. i hurt so bad, and i don't want to keep it together, and i was trying to not over burden, but now that i actually need help, i can't access it, but i have no one to blame but self. aaargh!
right. typing this on my phone. gonna go warm my hands up.
thank you for reading. it's very helpful to me to have written, and if you do have helpful suggestions or encouragement, I'd love to hear.
kind regards
cath tyler
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hazmatrec
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I'm sorry you have all this. it's pretty horrible. a... well, a right pain in the butt! ha. 🫡. puns are for when there's no other direction specified. as soon as the 111 nurse was able to talk me into saying this was a possible variant of a longer term problem, i knew i wouldn't get anywhere this weekend. if i find anything interesting out in the next coupla days, i will report back! kind regards
I've been learning a lot about what has been learned about nerves and how they work and don't work. still trying to get to grips. sometimes it feels like my pain nerves think I'm deaf, and i think my pain nerves are just shouting at me all the time! talk about miscommunication. 🙄
I am a forum moderator here at pain Concern. I have read through your post and can see you are struggling, with complex problems, It sounds like you are already used to using some pain management techniques,
I am wondering whether the Helpline at Pain Concern may be something that would help you. The number is tel:0300 123 0789. You can visit the Helpline page by following this link
thank you very much! I'm in the midst of getting in touch with the gp and rheumatology to see what needs checking and what needs adapting to (i got told off for not mentioning when some bits went numb about a year ago, but got serious grief for going to a&e when my knee locked and i could not sort it myself like usual). I've downloaded the leaflets to read through during today, and also ordered some to leave around the house, for my family. most of this early morning was me feeling guilty for being in pain. layers! i have a break from that right now. just the fact that I'm rambling right now makes me think a phone call to the helpline in a little while would do me good. thanks for reminding me you're there! heh. it's all in the group name and everything, but i forget sometimes.
kind regards
cath tyler
Hello hazmatrecI'm really sorry you're having such a rough time and I'm even more sorry I can't really offer you much advice but I just wanted to say we'll done for coming on here and getting all that off your chest so to speak. I think the helpline will be able to give you some really good advice and help you out.
My heart goes out to you and I sincerely hope you get some relief very soon. Good luck and best wishes.x
thank you, that's very kind. a lot of the time, i can get to that over whelmed point, but then take a double breath, or sing really loudly for a few minutes, and reset, and get back to juggling all the things. but sometimes, it's just not possible for me. I'm too isolated, or something is too different, or a tried and true tactic lets me down, or i don't get enough sleep, or I'm flaring anyway, or, and this is now, a bunch of those pile up. but see, now I'm not isolated. so, one down. thank you! kind regards
Hi Cath, I do the really loud singing too! It really makes me feel like a weight has been lifted from me mentally and physically... It really does help. I talk to myself too! Like "come on Marion, get a grip of yourself you can do this!!" That really helps too. I hope you're feeling a little better today. I think you're really strong dealing with everything you've been through! Remember we're here to help if we can. I'm here if you fancy a wee chat. Take care Cath.x
heh. i borrow our cat to talk to as well. which is the better, talking to the cat or talking to myself? heh. good thing about isolation, it doesn't matter, no one is seeing! heh. i wish i could be singing more often. it's... what i do. tiring and breathtaking. trying to flex the muscles tho.
gp tomorrow afternoon appt, rheumy Wednesday appointment. its a start of a slog.
Hello from Minnesota. I am also going the same as you. What chemo meds are you on? When my sacrum hurts I can barely stand let alone walk. I'm on Everolimus (Afinitor). I've been on it 3 weeks now with no sign it's getting better. Pet scan in a month.
hi, Burtie!whoops! I'm sorry. i forgot to specify. I'm not on chemo meds (altho i was on azathioprine once and methotrexate once), I'm taking leflunomide, a d-mard. altho I'm not ticking enough of anybody boxes, they're leaning towards psoriatic arthritis and sjogrens syndrome, so trying out l'mide. the other bit of fun is that the mris and xrays are showing me not aging well on top of the autoimmune stuff so I'm creaky and well as cranky!
sorry i missed out which med. there's no good way to rest the sacroiliac, that I've found, at least. even lying down propped up with no crossovers doesn't work for long. have you found any good ways to sit or lie down? actually i think i have one, but i know it's not good for any other part of me, so i try not to give in and do it.
where in Minnesota? i grew up in nj, and spent a bit of time mostly in st paul.
Hi hazmatrec , I had awful sacroiliac pain some years ago and could hardly walk, i had a guided injection in the joint and it really helped, I have the occasional niggle every so often but not had the awful pain since.
ooh, that sounds a good result! from whence came the idea for the injection? sorry, reading too many books... which dept or clinician type , if you don't mind me asking? because it's a new... thing, not necessarily a sign or symptom, i do want to check it's just... sorry, "just" pain, as they put it, before leaping into more "management" and "adjustment". and i mean, i don't want to check really, altho i do; i want people who know about lower backs to think about what I'm saying, ask questions if they need more info, and follow up their hunches and guesses, as well as tick off their ticky boxes of safety and coverage. then i want to also be able to use my knowledge of myself and what it's been like , like they would take info off the carer to help narrow things down.
what was the injection of? I'm realizing i don't know.
Hi, feel badly for you! Have they checked for inflammation? Did you get steroid treatment? What helped me was three x ray guided epidurals right to the nerve root with steroids, each two weeks apart. Immediate physical therapy 3x a week now for 6 years. Pain is low key and occasional Tramadol as needed only. Never had another epidural and not allowed bc now on blood thinner. Cant take epudurals in that case but oral steroids. Im 86 and no meds but Eliquis. Hope the pain lessens! Nerve pain is the worst, landed me in the ER numerous times. Morphine did not even help!
hi! sorry, delayed response... i was on oral corticosteroids for a while with suspected polymyalgia rheumatica but have been off for over a year, on leflunomide for inflammatory arthritis of some sort. it's not helped/ hindered whatever this is, it broke on through everything I've been on and doing. yuck. I've at least been clearly pointed to go speak to the rheumy specialist nurse folks about iteven if that does not help me step/ sit/ sleep less painfully now. I've been given some morphine. i can feel the morphine doing things, but not helping lessen the sensations of pain. sigh.
thank you, Einbaya.i hope you find some ease in your pain.
it's really comforting to me to be able to come in here and say 'ouch', and know that I'm understood, on the very base level, as well as sometimes the details. i have a chance to be strong when i need to because i have the chance to say I'm feeling bashed when i am.
heya! I'm replying to my main post with an update, i hope all you kind and helpful folks can see. i had both the gp appt and an appt at rheumy department this week. the gp appt i had thought was going to be my annual review (the check in for the top 2% of people at the practice most likely to end up in a&e unexpectedly spozed to get the once over at least once a year), but i had added in about this issue on my notes. turns out they had it actually as appointment to talk about bad feet joints, hair loss, and bruising, from an appt that was postponed because i had covid, weeks ago. so, not enough time spent on anything. and it wasn't with the person I've been working with. but she had been briefed. i managed to stay calm and do what (mostly) i needed to do. rheumy and musculoskeletal had said go the gp. gp said go to rheumy. but also helped try to adjust some medicine for acute pain, saying it sounded like trapped nerve, and if i could move to release it, that would be good.
so, helpful, but not done.
next day was rheumy appt, but that was a blood monitor, not a review. i pestered anyway, and said i had come full circle on directions. this time i was told, talk to the specialist rheumy nurse, and be persistent. that will be Monday. ah, the gp said she could feel inflammation, and would write to rheumy saying what she found, seemed like system flare. possibly helpful when it's not just me coming in going, 'ow'.
that's a far as I've gotten practically. however, you folks have been really supportive. i often falter when persistence is needed, and i haven't. thank you for that. a lot. like, a lot, a lot.
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