At a loss! Ideas of what this could be please…

[BBmom91]

Hello everyone!

*Back story- Woke up one day over the Christmas period (2024) to pain in my left leg as I was walking up the stairs and on the school run. Felt like stiff joints.
Weeks went by and the pain in my Leg disappeared but was replaced with what I presumed was sciatica! - bloody awful. I spent weeks awake with the lightning bolt pain and couldn’t put weight down on affected leg. Spent two weeks off work. Compete emotional wreck, living on ibuprofen! Burning pain in my bum, leg, ankle and foot! Legs would go numb and pins and needles impacted my daily life.

I have had this pain for a grand total of 11 debilitating weeks!

I went to a private consultant to have this checked out.
NHS GP was utterly useless, told me I had hyper mobile shins and stuck me on a 12 month waiting list for physio. Offered me tramadol for pain relief and I refused as I’m very hyper sensitive to lots of drugs.
So I went private to get a second opinion.

Doctor wasn’t concerned at all but he arranged an MRI scan of my spine as he said that the spine is the root cause of leg pain- especially sciatic pain.

Anyway I’ve had the results- nothing found! Totally normal, no compressed nerves, spine intact. The only note made was that I have normal wear and tear of someone my age (35 tomorrow!)

The pain has definitely become more manageable compared to the first few weeks of all this but I feel as though I’ve just learnt to live with the pain (maybe?).
What’s more is that the pain has now radiated to my inner thigh which I believe has been caused from over compensating on to the other side. The inner thigh pain feels like a very severe torn muscle that twinges as I walk! No spatchcock chicken pose for me!

Private consultant said he wants to leave it and if the pain hasn’t gone in 6 weeks then to go back to him.

The thought of putting up with this for another 6 weeks is terrifying me. I don’t want to be thinking about the pain I’m in every single day. I just want to get up and feel normal again.

Does anyone have any ideas what this could be?

-Leg isn’t hot, swollen, painful to touch.

I have tried Accupuncture which relieved me of pain for 2 days but then came back with a vengeance.

5 sessions of physio (this was done via FaceTime as it was all my insurance could offer me) they told me that sciatica can sometimes take up to 20 weeks to relieve.

Compression stockings worn at night - attractive!

I’ve started swimming 3 times a week.

Nerve flossing exercise aggravated the pain even more.

Blood tests done- all normal apart from my underactive thryroid - I’m over medicated
And my b12 is almost too low.

Ive also been told that I’m hitting the menopause- hormone blood tests suggest I’m perimenopausal and on the border of menopause.

Please could anyone share some light or own experience?
I would be so grateful’!

Thanks so much 🩷

It does sound like sciatica to me. I get it but not too bad but my mum and sister get it really bad. I think my mum takes cocodomol for it and it does take time to fully go, I'm sorry to say.

Would naproxen and omeprazole prescribed by GP be a better pain relief option? I find it helpful for arthritis and tendinitis.

You don't need to keep seeing a physio? Surely in 5 appointments they were able to demonstrate and you practise the exercises which will strengthen and/or stretch the appropriate muscles/ tendons???
Physio is boring - but you've got to actually do it regularly if you want to see an improvement. You don't need any more appointments- you just need to get on with it yourself.

It’s like sciatica type pain.
but Have you looked at possible CRPS?

Hi everyone thank you for your replies! It means so much.

@longtompot thank you! As much as I hate knowing how much people suffer it’s actually good to hear that it’s common and it does last forever! Google says sciatica clears up after 6 weeks but the majority of people I have spoke to have said they’re sciatica bouts have lasted months! So sorry you suffer too. X

@AsIUnderstandIt thank you! Yeah I’m in total agreement with you, they have given me all the physio I need, I even have an app on my phone now with the exercises on but they aggravate the leg a lot. I have been told I need to push through it but some days it’s so painful.
Naproxen always gives me anaemia unfortunately so GPs are always really cautious giving it to me. I take omeprazole with ibuprofen. X

@MiddleAgedButterfly thank you! No I didn’t even know what that was but very interesting and could absolutley be a possibility. Especially as the pain is chronic now. I’m going to research CRPs a bit more as there is definitely a link there. X

I’ve had the shoulder equivalent for the last 4 months. It’s definitely on the mend but I’ve been told it takes 4-6 months. I was prescribed Naprozen, Zapain, and amitriptaline, than they kept the pain under control much better than ibuprofen and paracetamol. Make sure you’re getting plenty of rest. Prop your legs on pillows as needed and get an electric heat pad (it’s like a mini electric blanket - about £20 from Amazon). I found it incredibly soothing.

I was going to ask about B12 and thyroid as I have chronic pain and have issues with both of those. Definitely take some sublingual high strength B12 - Jarrow do good ones - to boost your levels quickly. When you say you’re over-medicated on T4, is that based on TSH or on a full thyroid panel? I don’t take T4 anymore as i felt awful on it. Tried T3 only but that wasn’t ideal as you have to take it twice a day so I kept forgetting. Natural dessicated thyroid (Thyroid S) works best for me but I still suffer with some symptoms, just not as much pain as with Levothyroxine.

I would get some infra red pads or a lamp to help bring down the inflammation , infra red really helps speed up recovery.
tooical strong hemp cream is good for pain relief and alongside that, rub in castor oil regularly for further anti inflammation. Put magnesium flakes by the handful in your bath, add castor oil to your bath too. All these things will make it slightly more bearable and speed up healing.
if acupuncture helped but only for a few days, I’d try acupressure you do yourself. No doubt the points will be available on line.

I am hyper mobile and my sacroiliac joint likes to move a bit here and there. When it does, it irritates my sciatic nerves. Only physio helps, alongside painkillers. Sometimes it can take up to 3 months, other times a week.

Currently doing my physio for where the head of my femur has displaced very slightly, causing groin pain when I walk. 1mm is all it takes! A physio actually took the time to show me on an x-ray where they could see movement.

I had something similar during pregnancy and was very lucky to have been referred to a physiotherapist who diagnosed and fixed it right away. It was the fascia in my thigh/bum area that had seized up and pinched the nerve causing sciatica. It wasn't a slipped disk or anything spinal, hence it wouldn't have shown up on scans. The treatment involved heavy rolling massage of the entire area to loosen up the connective tissue. Home remedies, heat, stretching exercises were not effective at all. However after she loosened up the connective tissue, I did gently heat therapy at home for a while to keep it from stiffening up again.

My symptoms also started from one day to the next after taking a walk and feeling a bit of pain in one leg. Felt like regular muscle pain but developed into excruciating sciatica. If it hadn't happened to me then I would never have believed that the fascia alone could cause that pain.

Have you tried a chiropractor? They are different to a physiotherapist. My husband hurt his sacroiliac joint.

I can't offer any advice, OP, but I'm in the same boat. Mine started as not being able to sit too long in the car and now, a few years down the line, I'm at the point of struggling to climb stairs and can't put my weight on my left leg. I actually commented to my partner last night that I need to book a physio of some kind as I can't stand the lack of mobility any more, and I'm only a few years older than yourself.

You mentioned the Dr commenting on "hypermobile shins". I have Hypermobile Ehlers Danlos syndrome and wonder if there's a link somewhere. My sciatica didn't start until my EDS started to become worse (stiff joints/ pain etc.) Perhaps it's something we should look into.

You have my absolute sympathy, though, as it's truly awful. As another poster said, it's hard to believe that one little nerve can cause this much trouble! I hope you get sorted soon.

@DameEdnaAverage2 I would hazard a guess that yours is absolutely related to your eds. That joint, or any other bit of your pelvis moving out even by a tiny bit can cause issues. I currently carry a walking stick with me as, although the physio is helping, it's going to be a few weeks before the muscles have built up enough to support the joint properly. When you look at physio, really try to find one that understands connective tissue disorders.

Hyper mobility has been mentioned and this can cause significant systemic problems. Your GP will not have the expertise in this unfortunately.

I have EDS. I have to tell my GP about it. Not their fault but you'll be flogging a dead horse asking them.

Naproxen with omeprozole really is best for sciatica. It's inflammation. I find ibuprofen worse stomach wise. But I understand it's not something you're comfortable with.

Tramadol, codeine does not manage inflammation.

You have next level anti inflammatory medication that a consultant usually prescribes. I forgot the names. It is not steroids.

Heat pads permanently on the lower back help. Stretching out the sciatic nerve ( good exercises online).

Another person with EDS so stupid hypermobile. I use to have the worst sciatica on all sorts of meds and the one thing I’ve found helps is proper realignment/deep tissue massages.

I still get flare ups but a massage normally fixes if right up

Just thought I'd mention that my femur is has realigned itself with my pelvis, so groin and hip pain has gone. I can comfortably walk again, as my sciatica is now just an annoying twinge in my calf, and vaguely numb little toe. My walking stick is now folded away until the next time 😉.

I was wondering if you feel better now,op? I hope so.

Thank you, I eventually got a diagnosis. AVN of the hip joint, i'm due to have a hip replacement by the end of the year. Was a shock but i'm dealing and accepting of it now. xx

low b12 can cause nerve issues- I would make sure you are raising this to rule out this aspect, but you need to take folic acid aswell- the most absorbable for many people are ‘methyl’ forms - so look for a methyl b vitamin complex to take that has both in.

are you vegetarian/vegan? B12 is found in meat and dairy. If you are not absorbing it from your diet then I would question why?? Potentially if your thyroid is autoimmune then might be worth testing for pernicious anaemia (more common in those with autoimmune profiles) as you would need b12 injections rather than tablets.

good luck! Must be horrible living like that with no end in sight.