advice re knee pain.

[Runrig01]

hi, I’m a 58yr old, who suffers from an inflammatory arthritis, called ankylosing spondylitis, and mainly affects the spine but also peripheral joints. 10 weeks ago, I was on holiday in Devon, and suddenly noticed my left knee was buckling. A week later it gave way in the shower and I fell and gashed my leg. My gp sent me to A&E to rule out fractures of the spine or pelvis. Scan was clear, so sent home.

over the weeks the pain has intensified and goes all the way from mid shin to my hip. I had an urgent mri on Sunday, and returned to A&E today for the resits. I was shocked when she said it was a flare of severe osteoarthritis, and not any issue with ligaments ot tendons.

I already use butec patches, tramadol and paracetamol. I have also resorted to brufen, though I’m not meant to due to a severe stroke 5yr ago. I’ve tried ice and heat with little benefit. Does anyone have other options.

also is it normal for the pain to go from mid shin to the outer thigh and hip. Feel quite disheartened as was hoping knee just needed steroids or a brace, and quickly get on my feet again. I’m currently housebound, and unable to even stand in kitchen long enough to even make a coffee. Will my mobility recover?

[piglette]

I went to a talk a while back given by someone who had Ankylosing spondylitis, who recommended the Alexander technique. She raved about it.

[Runrig01 in reply to piglette]

I recall a session a few year ago at a rheumatology talk. I’d certainly look at trying it. Thanks 🤗

[piglette in reply to Runrig01]

Have a go!!

[suzy1959]

Hi there! I'm so sorry you are having this trouble.

As you know, I had OA in both hips and knees and my pain does not sound the same. The knees hurt just in the knee area and the hip pain was mostly in the groin area. My OA did not "flare" either. It was just there all the time and no painkillers helped at all. I guess the next step is to see an Orthopaedic surgeon as they are the specialists in this field?

[Runrig01 in reply to suzy1959]

Hi Suzy, this is what is puzzling me, as the pain where the patella tendon joins the bone is excruciating as well as the outer knee. My other knee has shortened tendons due to the AS calcifying it, and resulted in the patella subluxing a few cm. That caused severe osteoarthritis of the patella femoral joint, so behind the knee cap, and the area of the femur it comes into contact with. That gives the kind of pain you’re describing, just deep within the knee. This pain is so severe, I struggle to reach my kitchen, and cannot stand waiting on kettle boiling, or even prep a sandwich. As the pain builds up till I sit down. As you know I e had chronic pain for many years due to polymyalgia or AS, even having a slipped disc in my neck, was less painful, and at the time I thought pain couldn’t get worse than that. I just want to return to my mobility level, we’ve had to hire a wheelchair due to the limited steps I can take. I’m usually a very positive person and fiercely independent, and I so want ghat person back.

On top of this my gp wants to switch me from butec patches to Zomorph, but requires removing the patch for 12hrs, which with this current pain, I can’t see me managing. I’m happy to try once this acute episode is over, but less painkillers at the moment terrifies me. As nothing is really touching this pain. I’m open to any ideas from everyone, as I’m desperate to get back to where I was, but this has been going on for 10 weeks now, and started suddenly with knee buckling. Hope your doing ok xx🤗

[suzy1959 in reply to Runrig01]

Wow! That sounds terrible. Maybe an Orthopaedic consultation would be worth it even if it just rules out OA, but they would also know more about ligament and tendon damage. You have a complex history ( sorry-I hate being told that!) so need experts to help you out. I don't know how specialised the doctor who told you it was OA actually was?

This is not tolerable and I think you have suffered more than enough.

[Runrig01 in reply to suzy1959]

It was a junior SHO, and my worry is haven worked with many orthopaedic registrars and consultants who struggle to interpret images, I fear this Dr has just looked at the ligament mentioned by A&E Dr, and made her judgment on that. I was going to request my records for the last 2yrs anyway, as going to apply for pip. So I will see what the full written report finds.

I’ve had a chesty cough since my hospital visit, and my peak flow has plummeted. So I took 30mg prednisolone to see if it settled. Lo and behold knee pain is better, still sore but nothing like it has been. Im on life long steroids for the adrenal insufficiency, but will see if she’ll prescribe a higher dose for a week or so. Yes even my experienced senior gp said I’m complex, they are all scared of the adrenal insufficiency. Im the first one in his many years of practice. Definitely going to get an orthopaedic referral started, so 🤞🤗

[Happyrosie]

do you belong to NASS, the charity that specialises in this disease? You might get some advice and help there.

My husband suffered with AS in his early twenties, now aged 80!

[Runrig01 in reply to Happyrosie]

Yes, I’ve been a member of NASS for 7yr, they have been very supportive over the years. I was diagnosed 7yr ago, but already had fusion of my sacroiliac joints and ribs, resulting in no chest expansion. The specialist said then all my backpain episodes over the previous 25yr are very likely AS. When I was 29 I had a spinal X-ray having injured my back on a patient. The Dr then said there were signs on my X-ray that I would have serious issues later on. I was taken aback, that I didn’t ask what. The dr who diagnosed me worked as an adviser for Nass and she said he probably noticed the changes in the SI joints. I’m glad I didn’t get told then, this was pre biologics, and I would probably have felt I needed to change my career as a trauma nurse. I’m just desperate to get some mobility back and regain my independence, as I hate anyone doing anything for me. Thanks for listening 🤗

[Mikmax]

morning I suffer with osteoarthritis of knee and particularly hands but also get attacks of tendonitis all over my body ankle, shoulder, hips, leg etc. I find yoga and exercises help that and physios have been particularly helpful. Why don’t you ask for an appointment with the pain clinic?

[Runrig01 in reply to Mikmax]

There’s a 2yr wait for the pain clinic in my area. Prior to this acute episode, my pain was manageable. I did do yoga for a while, unfortunately I fractured my lower ribs on the left side, just doing a stretch to hands on the floor and walking your hands to the right. My rib cage is fused and that little stretch caused a snapping sensation followed by severe pain. Dr advised me to avoid yoga, due to my limitations with some of my joints. I do daily stretches and strengthening exercises on the Nass site for people with AS.

[Batty1]

I have psoriatic arthritis that attacks my tendons (Enteritis) and I get the same pain as you described when Im flaring…. They should do and MRI or Cat scan to rule out meniscus tear which should be repaired if you have one which sounds possible since your knee gave out.

[Runrig01 in reply to Batty1]

I had the mri done on Sunday, and then had to return to A&E for the result. She says there is no damage to the ligaments or tendons, and couldn’t explain why I have swelling over the patella tendon, and where the worst pain is. I was an orthopaedic ward sister ironically, I’m confident to not my meniscus, I don’t get any catching. My worry is this was a junior dr interpreting the images, with no report from a radiologist. My other knee showed high intensity lesions throughout the patella, and calcification at the enthesis which has caused shortening of the tendon, resulting in the kneecap being pulled slightly out its track. My gp who ordered that mri 6yrs ago was confident the same issue with the left knee, on examining patella position. I think I have to wait to see this radiologists report.

[Batty1 in reply to Runrig01]

Catching usually happens when you have a flap tear …. If MRI showed nothing then maybe your having some type of Arthritis Flare (Not OA) because OA does not attack tendons but Im sure you know this already. My PSA attacks only tendons in my body and it doesn’t care the outer side of my knee into my calf have been acting up as well as both of my shoulders and MRI show Calcification of tendons… Do you have Psoriasis? Have you been checked for Rheumatoid Arthritis?

Maybe you need to see a Rheumatologist with your MRI and get his/her opinion.

[Runrig01 in reply to Batty1]

Unfortunately despite my AS being classed as aggressive, I never have raised inflammatory markers. Nass do state 50% of AS patients fall into this category of never having raised markers, which I seem to fall into. Makes it difficult getting rheumatology to accept that there is inflammation. I’m contacting them tomorrow, so hoping they’ll agree to try a steroid injection. The previous times I’ve had steroid injections they have helped enormously. I’d even be happy with an intramuscular injection, if he’s worried about causing further tendon damage. Keeping fingers crossed 🤞🤗

[Batty1]

It seems PSA and AS have Tendon issues in common! So it’s possible your AS is causing your knee issues.

Check this out for treatments:

mayoclinic.org/diseases-con...

Difference between PSA and AS

[Runrig01 in reply to Batty1]

It certainly does. Im certain it’s my AS, it’s so similar to the right knee 6yrs go. My jaw is impacted by it as well, and have an Oral Medicine Consultant in Guys looks after that. I also have lung complications from the AS, as well as an enlarged heart. Peripherally it’s mainly my feet, knees, and shoulders that are worst. People don’t realise these inflammatory arthritis conditions impact more than bones. They just keep on giving.

I looked at your link. I’m currently on MTX 25mg to help the peripheral symptoms and a tnf biologic for the AS. Unfortunately my nsaid Etoricoxib was stopped, I had a severe stroke in 2018 due to an adrenal crisis. It was 3 weeks before my first endocrinology appointment to discuss my adrenals that I had the stroke. The 48rs leading up to it I knew things weren’t right, I was tearful at all times, having never really got stressed before. I asked my gp if I could increase my prednisolone by 1mg, but he said stay at 4mg till you see endo in 3 weeks. 24hrs later I had the stroke, the endo said if I’d followed my gut I may have never had the stroke, frustrating.

[Batty1 in reply to Runrig01]

I feel for you and certainly understand the complexities of Arthritis… its life sucking and that’s being kind.

[Daddyishealing in reply to Runrig01]

What caused the adrenaline crises

[Runrig01 in reply to Daddyishealing]

The adrenal crisis occurs when your body doesn’t produce enough cortisol to sustain life. It controls most of our daily functions and you can’t live without it, I produce none because steroids have resulted in my adrenal glands atrophying. Unfortunately the steroids were for polymyalgia and GCA for which steroids were the only treatment. When you’re exposed to stress, good or bad, in milliseconds your body produces more cortisol to deal with the stress, my body doesn’t. So I quickly get nauseous, headache, lightheaded, which progresses to Luke’s of slurred speech, staggering, confusion. This all continues to escalate till I either if I’m fortunate enough, take more fast acting steroids - hydrocortisone, or inject myself with an intramuscular steroid injection. Vomiting, infections, dehydration and injuries are some of the common causes of having a crisis. I suffer severe migraines and have to inject as I vomit 10-12 times, and can’t tolerate any oral meds. I also have to inject before some procedures or dental surgery. If I do inject I’m supposed to go by ambulance to A&E for more IV steroids and fluid replacement, and to treat what caused the crisis. Even an argument can trigger low cortisol symptoms and have me needing more steroids. It’s life threatening, rare and I wouldn’t wish it on anybody. I have to consider each day, what stress I may be exposed to and preempt it, but obviously you can’t plan for everything 🥲🤗

[Daddyishealing]

Same position as the post ..bed bound 47 both knees both hips one need so severe and pain meds doubled and still can't walk will need wheelchair can't believe this is happening rh recommended axithropine but I'm scared

[Runrig01 in reply to Daddyishealing]

Sorry to hear your on a similar position. My hubby hired me a wheelchair, to get to appointments and scans. We’ve returned it now, so considering the possibility of purchasing one, much as I’d rather not. Nothing is really helping the pain, I did get a 100ml bottle of oramorph, but that’s gone now and they won’t provide anymore. It was only a 5mg dose up to 4 x a day, but took the worst of the pain away. I think in my case as well as the severe osteoarthritis, I also seem to be having patella & quads tendonitis. I’m currently on 30mg of pred for a chest infection I picked up whilst in hospital, which has improved symptoms slightly, but can only walk briefly Troon to room, then need to sit down. Still can’t cook the lovely homemade meals I normally cook.

Hope you find some reprieve soon 🤗