I recently had a lovely holiday in Devon, where I probably pushed myself too much, and ended up with my ankylosing spondylitis flaring. 12 days ago, I started getting moderate pain n my thigh and knee, and the thigh would suddenly feel like jelly and buckle under me. This resulted in me falling in the shower 8 days ago, gashing my leg open as well as plenty bruising. On Friday I woke to severe pain from my left lumbar area to my shin, it is a deep bone pain and on a level with the intense pains of childbirth. 111 advised me to go to our local urgent treatment centre, where my GP happened to be covering. She insisted I attend A&E to rule out any fractures. So Saturday I spent 16hrs in A&E, I had a CT scan which ruled out any fractures, but as I have fused sacroiliac joints and 2 slipped discs, they couldn’t tell if the nerves are impacted and being compressed, so have to get gp to organise an MRI.
I personally feel the leg buckling and severe bone pain is resulting from overdoing things on holiday. They’ve given me 30/500 cocodamol to take alongside my Tramadol and butec patch, and 20mg prednisolone to get on top of the pain, but it’s barely touching it. I’m struggling to even potter round the house, even with my stick. It feels like this bone pain is where tendons attach. Has anyone else experienced this type of pain and got any suggestions on how to manage it. I’m using my heat pad, unfortunately unable to soak in the bath due to leg wound, and I couldn’t safely get in. I’m terrified this isn’t going to settle, I’m literally housebound at the moment, unable to drive, and having to cancel appointments as I can’t walk more than around 10 steps. Sods law, my blue badge has just expired, despite submitting my form in April it will be another month before they look at my application. Not sure what I’m looking for, and this is probably disjointed, as my head is all over the place. I can’t even stand long enough to boil a kettle for a cuppa. I have my 81yr old mother in law making me cuppas, when it should be the other way round. She’s here from Spain and I should be taking her out and about, enjoying our lovely weather. Sorry for ranting.
Written by
Runrig01
To view profiles and participate in discussions please or .
Ouch. I’m not sure what to advise but neither the hospital nor GP will know how you are suffering unless you tell them. Maybe get a home visit from GP? Or go back to A and E?
thanks. A&E Dr was good, and is organising a referral to the pain team to optimise my meds, as well as referring to neurology. I also have lots of numbness over the knee and inner leg, which I feel is just being caused big the localised inflammation. My Gp said to send her an EConsult re outcome and prescribing further steroids or pain relief. I’m also going to speak with my rheumatology team, but he’s as useful as a chocolate teapot. I seen the nurse just before my holiday as I’d started flaring with my feet, and she said she’d speak to him and send me a prescription for steroids, but unfortunately didn’t materialise. She also felt my biologic needed changing, last time they were considering that, they insisted on an mri. So it may be better asking rheumy to do mri, as they do a stir sequence one that highlights inflammation. This pain is different to all the pains I’ve had over the years, as it’s very intense and feels deep within the bones, difficult to describe. Thanks for your reply, take care 🤗
I’ve only ever been on the one biologic, benepali which is the biosimilar of Etanercept. Been on it 6.5yr. I did look at swapping 2.5yr ago when I was struggling but he insisted on a new mri but although it showed inflammation it was t significant enough to justify swapping. They then started treasuring the pulmonary fibrosis that had been causing my shortness of breath, and the flare subsided. So I remained on benepali. My Trust only lets you try 2 tnf biologics, so slightly anxious because if I swap and it doesn’t work I’m stuck, as I can’t take nsaids. There is no sign of this severe pain subsiding, and having to stop the Brufen I can take occasionally, my leg is screaming in pain this morning, could happily chop my leg off.
Did you get the pulmonary fibrosis from the TNf blocker. I got these symptoms while in cimzia and humira was helping a little but i got very symptomatic and my legs git worse . I dint understand why the stiffness of the ligaments and tendons frin knees ti pelvis to hips . Is this common? I'm petrified . Your insurance Mt alloke you to try other treatments like Jak if TNf is just not covering the symptoms. My anxiety is the meds themselves and the fact that I was in meds when this happened and never recovered and nothing makes sense . Kit pleas I'm new here and need support so much . I wish I could take your pain away . What said helps you ?
No initially they blamed the MTX and I was asked to stop. It’s a known potential issue for AS anyway. The respiratory specialist said recent research actually shows MTX can delay onset of PF, so she insisted I restart MTX. So I’m currently still on my tnf and MTX. I prefer to accept quality over quantity of life, so am happy to accept some risks in order to enjoy my life, but everyone has their own perspective on what risks they’re prepared to accept 🤗
So you think I'm better off using biologics even if cancer and leukemia both parents die from. I'm petrified bc on humira I suddenly felt like I had civud and I know my lungs and heart were inflamed .the EKG said poss inflamation but x ray did not show however pleurisy if slight is bot always detected by the x ray until it's severe but I know my body and the stress of my dad in prices of dying has taken a toll and diseases sped up brutally . I'm trying to delete dusrses from symptoms and figure out wtf to do bc I dint want to die . Do you have any hope or wisdom bc imntryly a nervous wreck and getting more health anxiety bc I dint understand knowledge was always the power that kept me sane and nothing makes sense to me anymore . I did not try methotrexate a I already have only enough hair to fit in an infant clip. Did you dt relief or was it very scary. Wee you ever bedridden and then fought to walk again and did or know anyone who has ? I def need to doesk to someone who is experiencing this I wish there was some way of integrating med with natural treatments that works bc I feel more scared the more I know and it's bot conducive to me tsl health. We will heal. Together we are stringer than alone and together we will get these rickety legs to hold you or bodies as we feed our souls. I wish I could stop your pain too truly ,eda ❤️
I’m sorry to hear your suffering such anxiety, and can understand your caution re biologics. It’s a very personal choice and one I can’t answer for you. I’ve never been bedridden and actually still forced myself to work as a nurse for many years untreated.
Have you considered having counselling or seeing if there is any local rheumatology support groups near you. We have one in my town that’s held monthly, with speakers giving talks and time to chat with others in a similar situation. She me natural remedies have potential side effects too, and can interact with regular meds, so I would check with your Drs what is suitable.
I found MTX excellent at settling my peripheral symptoms, and get no nausea or fatigue. My hair thinned slightly, but I have so much of it, it’s not noticeable. I get anxious when I have to hold my MTX as I know my pains will quickly return. I do have ankylosing spondylitis though rather than rheumatoid arthritis.
Oh Runrig01 - what a dreadful time you’re having. So much pain. Is there any way you can speak to a human being in connection with your blue badge and get them to hurry it along - failing that I’d just carry on using your out of date badge and if it is ever checked and you have a problem produce a medical certificate - although from the sound of things you can barely make it out to your car let alone drive it.
When you finally get your MRI - hopefully your GP might be able to rush it through (I had to have mine done privately!) ask them to look out for a sacral fracture, believe me I’ve had one and that is absolute agony and I think you need an MRI for it to show up. If you feel as if your leg is buckling it does sound like something somewhere could be broken. Sounds grim.
Good that you have been sorted out with what sounds like good pain relief - when I fractured my sacrum it sounds ridiculous but pain relief was all that could be done along with gentle moving / physiotherapy. I used a backpack as an handbag and my Nordic poles to help me balance and take the weight off my hips and knees.
In the meantime I think you’ll have to let your mother in law make those cups of tea while you rest/ try lying flat on your back with your knees bent if you can get into that position / try alternating your heat with an ice pack if you can figure out where to place it.
I really feel for your misery and hope things improve soon. 💐
hi Fruitandnutcase, thanks for your reply. The buckling of the leg is bizarre, within seconds of standing my thigh and shin bones get intense pain, then there’s a band around mid thigh that literally feels like it’s turned to jelly at which point the leg gives way. Using my stick around the house for what little I’m doing, to prevent falls, but didn’t take it n the shower. I do use a shower seat and had literally just stood up as I’d finished washing.
My coccyx has a black bruise about 6 inches in diameter from the force I landed with. Thankfully nobody sees that, and I do use a coccyx cushion normally anyway. It seems bizarre to described it like childbirth but it’s like the severe contraction type pains you get in labour.
My mother in law is wonderful, unlike my own mum who is super fit and likes to be waited on. So mil is keeping me topped up with coffees. I just feel guilty as had plans to take her out and about. I did email re blue badge but got an automated response saying out was taking 18 weeks. I have sent another explaining re fall with leg buckling, and needing to attend surgery for dressings, and that I need to park near and have enough room to open door to get in & out, but not holding my breath. Thanks again for your kind words 🤗
Don't feel guilty for not taking her out and about. It might be that she is now feeling really useful and valued for being able to care for you. She may feel it is a privilege caring for you, and will be making her feel good about herself and it should strengthen the relationship between you both.
thank you. I’m fortunate that I have a wonderful relationship with my mil, much closer than the relationship with my own mum, who has never been a family person, and is never interested in how any of the family are doing. I know I’m a lucky lady to have such a wonderful mil. Thanks again 🤗
I am so sorry to hear of your situation but don't have a lot of suggestions other than contacting your gp again. If the pain is a result of you overdoing things whilst on holiday, maybe you need to rest up for a bit too, with gentle movements to keep things mobile.
Your MIL will be understanding of your situation, you can't do what you can't do. Let her look after you.
I honestly have been resting up since returning from holiday, especially since the fall in the shower. I was disheartened to find that the leg pain has worsened despite literally staying home and just doing a few stretches. Mil is quite happy chilling in the garden, it’s just me that feels the pressure to take her out and enjoy nice lunches. Hope you’re doing ok, as I know you’ve had your own struggles and A&E experience. I was there 16hrs, and it is so inefficient the way it’s run, the amount of times you repeat yourself. My gp sent me for X-rays to rule out a fracture. You’d think the triage nurse would then order them and they’d be ready for when you seen Dr. But No, you wait 4hrs for the Dr to see you and say let’s get X-rays and scans. So it’s no wonder waits are excessive. I honestly believe I’d still be there, if I hadn’t been moved off to an observation ward to wait for the CT. After 4hrs waiting for a porter, the 2 nurses I asked to confirm I was on the CT list, wouldn’t even check, just flippant comments re they’re always slow. I had no issue waiting, just wanted to know the request had been made and I was in their queue. The lovely male nurse on the observation ward, went down to the CT dept to check, and found it hadn’t been arranged, but managed to get it organised and done within an hour. Good and water was provided as long as you could walk to the waiting room entrance, those on their own and unable to mobilise didn’t get. My hubby sorted a few around us, but inevitably some were missed. I thought I’d it that difficult to ask people to raise their hand if they want something and are unable to get to the trolley. I was sent a feedback text, so have been brutally honest 😂😂
Your A and E experience sounds just awful. 16 hrs, what can you say ? The system is well and truly broken.As for duplication of effort adding to the chaos...oh yes, different people asking the same questions over and over and over, with little or no action taken. Staff walking past avoiding eye contact in case they are asked questions.
I often get a dragging feeling in my pelvis similar but not the same as dysmenorrea, it is a bone type pain and my hip clicks and feels as if it is giving way. No one seems interested when I mention them.
I sympathise re the pelvis, my AS causes constant inflammation in my pelvic bones. I recently received my letter re my smear test being due. However the last one was excruciating due to the inflammation, so I don’t relish the idea of having it done at the moment. Think I’ll wait till things settle, but even with Baclofen it was unbearable, yet all previous ones I’ve had no issue. It is frustrating when you have an issue which is causing you concern, and health professionals brush over it. My tongue gets inflamed as well as jaw pain when my AS flares. It makes eating excruciating, but they just shrug and move on. Have to keep having an ice cream to cool my mouth down after eating certain meals 😂😂, which isn’t the best solution. I seen an Oral Medicine Consultant at Guys who confirmed it’s all linked, just surprising some of the areas it affects. 🤗
I don’t know what you can do and when I broke my leg last year it as agony for a few days but once the ski boot was fitted it really didn’t hurt so much, and my ankle which I also broke hurt but was not too awful. Have you by any chance done your archilles tendon? My son did his and was screaming in agony until the operation was done. I really hope you get some relief soon. X and he couldn’t walk on it. My broken ankle could be walked on and mended far quicker.
Thankfully my Achilles is fine. I actually have one of the boots in my garage from when I had stress fractures of the ankle due to the Alendronic acid I was taking. Got crutches too, which I need to get hubby to get for me, as they’d probably be better than the stick. The sites where the pain is at its worst, is the area where the patella tendon attaches. With AS it’s common to get inflammation at these points, which they call enthesitis. It’s also very spongy there probably due to the inflammation. Over the years even undiagnosed with my AS, the pain hasn’t been this intense. I normally can push through and remain positive, but having to cancel appointments as I can’t get in the car to drive, and would even struggle getting into a taxi although it’s only a short distance to reach a car. I have nurse appointment tomorrow for my wound dressing, and hubby bless him is going to come home to take me for it. I have sent an EConsult updating my lovely GP, so hoping she’ll sort my prescriptions without a F2F as she wasn’t aware of the weakness in the leg, or numbness, but I don’t have any other red flags for cauda equina, and think the numbness is just due to the inflammation in those areas. Hope your doing ok these days 🤗
Oh dear sounds awful, I’m very well, just chilling in the garden having deadheaded my roses. I hope you can get some relief and use the crutches. If nothing else it’ll relieve the strain on one half of your body. And they come in useful it could be worth trying the boot, it can’t do any harm and if it helps then great if not at least it’s something else tried. Can you see an Oestopath you trust ?
unfortunately with ankylosing spondylitis we’re advised to avoid osteopaths and chiropractors, due to the excess new bone that forms, which is weaker than our normal bone. I do have a wonderful lady who does deep tissue massage, who I see every fortnight. Unfortunately I wouldn’t be able to climb on her table at the moment. Enjoy your time in the garden 🤗
I have Enthesitis of the Achilles following a severe muscle injury untreated during the pandemic. Your description of labour contractions is exactly how I’d describe it. I also get this feeling in my right hip, it takes your breath away doesn’t it snd no one is offering gas air!
Note my diagnosis is Stills Disease which for me manifests as rheumatoid arthritis.
sorry to hear you’ve experienced similar. I did suffer Achilles tendinitis about 7yr ago before I started biologics, and it was excruciating too. I think people who don’t suffer rheumatology issues, do t understwben you say it’s like labour ttpe pain with contractions intensifying. When I had the CT on Saturday of my pelvis and lumbar spine, I had to keep my leg still, it wasn’t supported on pillows or anything, and the pain in the leg was horrendous. I was talking myself through it, in between oohs and aahs, saying only 5 mins. I was in the room alone, and forgot they would still hear me 😂. They took sympathy on me and when we got back to the observation bay they gave me a lovely bed, which was bliss. Thanks again for your kind words 🤗
there’s a lot of ouches in this post but also remember you need to pace you can’t take on the world right now or everything will take longer to heal. Just be honest with MIL and if there is anyone who can step up to take her out for a day out see if they can too🥰
Thankfully I have a better relationship with my mil than I do my own mum. My mother feels she needs to explain I’m on steroids to anyone she meets, to justify my chubby face, as she worries what people think. Personally I couldn’t give a dam what others think, and my mil accepts me the shape I am. Hubby is taking Thursday and Friday off so can take her out for some mother - son time 👍. Sunny here today so going to rest in the garden with a good book. You take care, and thanks for your wise words 🤗
thank you for your kind words. Yes she is a little treasure all 4ft 6 inches of her. She’s a godsend, and always chases me when I’ve had appointments to see how I’ve got on. My own mum doesn’t even want to know what AS is, or the fact my heart and lung issues are all connected. She always has what I have, so suddenly her leg is buckling too 😂🤗
Shouldn’t laugh at that last comment but honestly - you couldn’t make it up could you! Is the pain in the ‘saddle area’ as well as your leg? If it is or if the pain is affecting your bowels and bladder then that might get you seen a bit faster.
Thank goodness for your lovely mil. I’m sure she’ll love her mother and son days.
thankfully no red flags for cauda equina, it’s literally my lower leg that’s numb. Would be wonderful if it was numb the whole way through rather than just the skin 😂😂.
Sorry I thought it was right up at the top of your leg, good that there’s no hint of cauda equine although that seems to be a fast track to getting attention. When I was in great pain I failed on the first question of were my my bowels and bladder working - yes and it was a ticket for the hospital outpatient GP - still better than my own GP. Should have said yes and might have gotten an mri scan 🤣
I am so sorry you’re going through such a dreadful time , worry and extreme pain. Give your self “ time”. Time is a healer, You will make some progress very soon. How lovely to have someone there to talk to and have cups of tea and coffee with . I have a lot of pain myself one way and another and know what it’s like to feel so anxious. I wish you better soon. 😀
thank you, and yes my mil is a little treasure. It’s frustrating when each day you wake up with pain, and often changes daily where it hurts. Hope you get on top of your soon 🤗
Hi, I can’t help on your symptoms but just wanted to say I hope it eases soon and you get that MRI, Your husband and mil sound great, perhaps you can hire your mil out I think we could all do with such a kind one at times 🤣. Your pain sounds horrendous, keep us posted 😘
thanks. Yes I’m being very well looked after. Unfortunately the pain intensity is continuing. Even weight bearing for a few seconds escalates the deep bone pain in both the thigh, shin and knee cap. It’s amazing how pushing yourself a little bit, can cause so much pain. At least there’s no fractures from the fall. Since increasing the steroids it’s not bucking so frequently, so hopefully making progress 🤞🤗
I don’t have any answers for you but wanted to send my support for what must be an awful time for you. I wouldn’t worry about your MIL I bet she’s loving the fact that she’s able to help you whilst she’s there. The only thing I can advise is when I slipped a disc I used a walking frame instead of a stick and found it was the only way I was able to get around much better than putting pressure on one side of the body. I bought mine from a charity shop not the coolest of contraptions but an absolute godsend at the time. I hope things settle and you feel better very soon.
I remembered I had crutches in my garage, so hubby got them in for me. They definitely help, as you say you’re not putting your weight on one side then. I still struggle even walking from my living room to the kitchen, the severe contraction type pain starts as soon as I weight bear. I have contacted the rheumatology helpline so hopefully they’ll get back to me, and my GP has arranged a F2F appointment for Friday. So hopefully they will be able to suggest ways of settling this. Thanks for your kind words, and I’m very grateful for my mil, she’s a little gem. Think hubby is happy knowing I have someone with me. 🤗
I am so sorry you are in such pain. But at the same time I am so glad you posted this because I have had the same experience - twice !
I hadn't been over doing things. The first time I was filling the watering can at the pond and nearly fell in, but the pain eased after a couple of days. By the time I got the physio appointment it was gone, and she didn't listen to me, just told me to do bridges which gave me more pain so I stopped after 7 months of doing her exercises. Never again!
The second time was far more like what you have just gone through, without the falling in the shower bit. That band around the thigh, nothing touching the pain but heat (I had three hot water bottles, one for each of my thigh, hip and lower back), that feeling of it giving way leading to it actually giving way.
Just walking from the sofa to the kitchen, I would start out being okayish, but after about 10 feet my leg would give way and I would feel that band around the thigh and it was worse than childbirth.
I also went through the 'what if this doesn't change, doesn't get better. What if this is the rest of my life'. But it did slowly get better with no intervention from anyone. I didn't even have painkillers which I really would have like to have. I can't take codeine, naproxen gives me headaches, so eventually they suggested tramadol, but it too two weeks to get to me by which point the worst was over!
This happened during a lock down, and it was more than 6 months before I got the MRI, and of course they couldn't really see anything. Eventually the rheumy said I might have PsA. But I don't have enough inflammation in enough joints to have anything beyond methotrexate, which doesn't suit me, so that's it for me.
But then, I figure, if I can live through that awful pain episode, I can live through anything!
Enjoy your MIL. Could you rent her out to me next time I have a turn like this? 😉
I am so sorry you have experienced similar. It sounds almost identical to what I’m getting. Like you I’m terrified it won’t subside. I’m on my 3rd day of 20mg prednisolone and leg seems to be buckling less, but the pain especially in the evenings and from 4am in the morning is horrendous. I agree it’s worse than childbirth, it reminds me of when contractions started intensifying, and keeps going till you either buckle or reach a seat. How you managed without painkillers I don’t know. I was already on butec patches and tramadol. I don’t take nsaids regularly as I had a severe stroke 5yr ago, but have been using brufen recently. The A&E Dr added 30/500 cocodamol to my cocktail, which all combined is tolerable when resting, but doesn’t reduce that pain when weight bearing. I’m already on a biologic as well as 25mg MTX. I’d seen the rheumy nurse 12/6 as I was already in a flare of my AS, and she said she’d speak with my rheumatologist re switching biologic. However I need to see him first and she said that could be 4 month as he’s booked up. I’m terrified of being literally housebound, getting to a clinic will be challenging. It’s 25 mile away so taxi will be extortionate. To get a train I need to get a taxi 1 mile to town, 2 trains, then another taxi. I wouldn’t even cope with standing on a platform, and would struggle with the steps into the train, as left leg is weak. My friends unfortunately all live in another town 16 Mike away, and work full time. I know if hubby can help out he will, depending on his work commitments. My head is just spinning, with how much I’m depending on others at the moment. Hubby is wfh today to take me to a nurse appointment to treat my gash on my leg from the fall in the shower. Sorry I’m ranting away. It’s nice to hear that somebody understands the strange pain and sensations I’m experiencing, although clearly not happy you’ve had to experience it. My own theory is it’s the patella tendon where it attaches to the bone that’s badly inflamed. I think the numbness is just coming from the amount of inflammation and it’s pressing on nerves in the area. I already have slight subluxation of both knee caps from previous flare of AS, that had calcified and shortened the tendon, pulling the patella out of alignment. It’s a disease that just keeps giving. You take care, and thanks again 🤗
Hi Maureen. So sorry to hear you are in so much pain, it sounds truly dreadful. Before I was diagnosed I experienced a couple of incidents of patella tendinitis, which really knocked me for six, and even now if I am in a flare I always get pain in my left patella tendon but no where near as intense as the initial episodes thankfully. I would describe the pain as coming in bursts of intense pain, maybe like a contraction as you say, or a sudden cramp. I ended up with finger end shaped bruises all over my thighs as my automatic reaction to the burst of pain would be to grab my leg so hard.
I can definitely recognise the jelly like feeling you describe, and a feeling of complete weakness in the leg like it would give way at any moment, although I was fortunate not to actually fall. I actually found that heat seemed to make things worse whereas regular icing seemed to help. That, along with a lot of rest, naproxen (sorry I know you can’t take anti inflammatories) and Prednisolone eventually got it to die down, but I’m afraid it took at least 2 weeks at 20mg a day before I started to feel an improvement. I didn’t experience any numbness though, so glad to hear you are getting a MRI organised just in case.
Do you have other symptoms which would be suggestive of a flare of your AS also, such as fatigue etc? For me, this always seems to be the case so when the pain is bad it gives me some comfort to think that as I ride out the flare, it will settle back down.
I had an appointment with the rheumatology nurse on the 12/6, as my feet were crippling me as well as the lumbar spine, and that inability to stand still due to pain intensifying. It was supposed to be the Dr, as she agreed in October that my meds didn’t seem to be helping much. Unfortunately he’s not available till September so I seen her again. My basdi score was 5.7, and she just repeated the same that I needed to see him. It’s 6.2 today.
The only other signs of a flare other than lumbar and feet, is the sweats, any activity at all, and I’m dripping and same at night. My fatigue is a little worse than my normal but not much.
That’s useful to know re the need for pred for 2 weeks, I’m seeing my gp Friday, so will see if she can do it for 2 weeks rather than 1. I just feel with how extreme this episode is, and the numbness and weakness, that I need more than 1 week to settle it. I normally love my heat pad, but find the same when it’s acute inflammation I need ice. I bought some bio freeze, but don’t feel any coldness from it, and I’m applying voltarol gel to the knee to help with the inflammation. Healthy individuals don’t get it, when you describe the pain as being so intense. Have learned my lesson on not pushing myself, when already in a bit of a flare. Next holiday rest with a good book 🤪
Bless you. I am not quite as bad as you at the moment but I totally sympathise. I keep feeling like someone has cracked a cricket bat just under my knees and over my Achilles tendons on both legs although my left leg is worse than my right. Rheumatologist’s advice when I sent him photos was to go to A&E. 12 hours later of course no DVT or infection. Lower back also terrible. His next advice was to go to GP. My fabulous GP saw me the same day. Guess what- he referred me back to the Rheumy! Such a waste of everyone’s time. I have been waiting to see him for over a year! He is now calling me on 31st. I just pray he doesn’t say he needs to actually see the joints to move me on to biologics! I think I will have to cry if he says he can’t move forward without. In desperation my GP put me back on prednisolone which I have been avoiding as I now have adrenal insufficiency with suspected Addisons after virtually 3.5 years almost solidly on steroids for severe asthma also and Covid x 3 rubbish. I fortunately am fairly resilient and don’t give up easily but what on earth am I supposed to do. Waiting for an “urgent” endocrinologist appointment - November too!! Thank goodness for my lovely GP and my Blue Badge. Could you maybe chase that up by explaining your circumstances? I do wish you well.
sorry your having similar struggles, and given the runaround too. I’ve been on steroids since 2012, and steroid inhalers for about 30yrs. I developed signs of adrenal insufficiency in 2017, and requested referral to an endo. 3 weeks before my first appointment I had a severe stroke found to be due to an adrenal crisis. My cortisol was undetectable when it should have been 1000+ at the time of the stroke. I had 2 SSTs which are how they diagnose adrenal insufficiency. Again both were undetectable and stimmed at 72, when it should have been 500+. My adrenals gave atrophied beyond recovery and I now need steroids for life and carry an emergency intramuscular injection at all times. It’s frightening what little stress goid or bad can trigger low cortisol symptoms needing you to updose. I had to be down to 5mg before endo would see, I got to 4mg which is when I had my stroke. Not sure if I’ve discussed all this previously, I recovered well physically but it badly affected my memory. I do have a good chart re low cortisol symptoms to watch out for.
I’ve written a few times to the local blue badge dept, explaining my fall, my need for space to open door to get in and out, as well as this recent setback. Just keep getting an automated response re 18 week wait at the moment. Even sent latest summary proving my current flare, still nothing. So looking at mid August edited they renew.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I can't sleep I have severe pain in the muscles in the calves of my legs
Severe pain in little toe
Leg pain and taking Tramadol
Knee unstable and buckling under me
