Hi i've been reading up on AS and i just wondered, those of you that have the condition, does your spine hurt to touch and can you feel the fuse? so does the spine almost feel like there are no gaps in it (in the areas that are fused)?
Just super worried as the areas of my spine that hurt feel different, almost like straight bone. I've been to a chiro (bad decision i know, stopped going now) and she did assess my spine and didn't mention anything about it. she did say something about thoracic-cervico dysfunction which is down to my posture.
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Amywoodx
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Haveyou had an MRI to identify fused vertebrae? As it’s hard to tell yourself. There can be fractions of millimeters between something that is excruciatingly painful and a joint that’s fine.
But areas where there us inflammation will be painful to touch.
no mri yet - I assume not for a long time. Still battling to get referred. I hope maybe I can see a private doc soon. Part of my spine hurts to touch and has been for a while😭 even when the rest of my back isn’t in pain, that specific area has always been sore to touch so that’s interesting to know - I think apart from the top area of my spine, it’s the muscles and the rest of the bones around that kill
Hello. I'm most bothered by sacroiliac joint and top of spine and neck. Certainly spine very tender in places. I do get excruciating lower back pain at times.
Please show the posts you put up here to your GP……..or in fact send her a letter including everything that you are suffering from.On this site we can only tell you how we deal with our own health problems…but what suits one person will not necessarily suit another….& in fact could cause irreparable harm.
I have had spine problems for years & have just had MRIs on my spine which showed considerable degenerative changes….but I can’t feel that.,,only having diagnostic tests can show up your problem.However now my doctors know about it…..some treatment will be worked out.
Why don’t you ask to see a different doctor at your GP practice…that can sometimes move things along?
I`ve had AS for 10 years. I`ve had MRI`s and my spine is fused in the sacroliac area in the lower spine. I`ve had really bad back pain during flare ups in the past especially in the lower back that were tender to touch but not all back pain I`ve had has been tender to touch, the level of pain and inflammation vary. I`ve taken methotrexate in the past but it stopped working after 6 years. I`ve also got seronegative inflammatory arthritis and osteoarthritis. I have many joints affected all over my body including hands and feet. I get regular costochronditis which pain and inflammation in the sternum and plantar fasciitis in my feet which is common with AS. I take CBD oil everyday which I find really helps the pain so I don`t have to take naproxen and paracetamol which works really well for my pain but I don`t want to rot my insides.
I also take regular supplements such as krill for my joints, zinc, magnesium, vitamin D3 and K2 etc which help alot and I do regular exercise like walking, swimming, cycling and physio exercises. I wear good insoles in my shoes and I wear trainers that help my feet especially my plantar fasciitis such as Asics Gel Kayano, Brooks and Hoka toe rocker trainers which give my feet the support they need. I`ve had several gait assessments to assess whether my feet pronate, supernate etc. I see a podiatrist and orthotist regularly.
From my experience I`ve had to do loads of research even reading medical journals from the british medical journal etc. I know what foods flare me including vegetables from the nightshade family, junk food, processed foods like white bread, white flour, white rice etc are no good. Foods like celery, carrots, beetroot, oily fish, herbal teas etc reduce inflammation. I`ve found this out by keeping food diaries and trial and error. I`m not on any medication for my AS and control my AS using natural methods. Be careful to not use the word natural around Doctors as they prefer the word pharmaceutical, lol!
I still research regularly, if you have any questions, private message me and I will answer them as best I can. You`re not alone and I know how scary it can be when going through diagnosis.
So I’ve had AS many years, was told at 29 I had issues with my spine, but no details. This was before meds were available to help. My SI joints and ribs were fused at diagnosis, which was at 51. That was 6yr ago now. My spine is always tender to touch, however my vertebrae don’t feel any different to touch. I’m unfortunate to also have issues with my heart & lungs due to the years of uncontrolled inflammation and the lack of lung expansion. I personally dong agree with Celticdancers route, as diet and exercise has not been shown to slow progression, despite improving your day to day pain. My pains are certainly worse with sugary foods, which I try to avoid. At the moment biologics are the only thing shown to slow progression. Most of my joints are affected, both knee caps are subluxed due to the patella tendons calcifying and pulling the knee cap out of alignment. I also have 2 subluxed toes on my left foot, and can see the same occurring on my right foot. I’m told most of my issues are due to the delay in getting diagnosis. I was under the care of local rheumatologists before I finally got my diagnosis, and that was only after a specialist 250 mile away requesting to see me. I use a biologic for my spinal symptoms, methotrexate for my peripheral symptoms and they are considering adding another dmard as my muscles remain extremely tender to touch. Like celticdancer I also get plantar fasciitis and Achilles tendinitis. I also occasionally get steroid injections to shoulders and knees. My whole rib cage is extremely tender, which I’m told is due to calcification of the many tendons attaching to the ribs. I believe I’ve sent you the referral criteria previously where if you score 4 you are entitled to a rheumatologist referral, but if need be I can resend it. It’s impossible to feel what’s going on with your spine by feel. You need an MRI, which needs to be ordered by s rheumatologist so that it is a special one known as a stir sequence that highlights inflammation, GPS order T1 weighted which suppress inflammation as they are looking for mechanical issues. I was actually diagnosed initially by X-rays of my SI joints due to the fusion there, then MRI confirmed other issues, such as fused ribs and 3 slipped discs. The specialist who diagnosed me said if my GP had acted on my complaints over the years, I probably wouldn’t have progressed as far as I have, so I would urge you to get referred and accept any treatment they offer. My heart and lungs are both affected by the delays in starting treatment. Take care 🤗
Hi My husband had had slightly raised ESR and CRP and had suffered from back pain and stiffness for years. He saw various GP's over the years who gave him painkillers said it was because of his job as a black cabbie. He was referred to MSK and had a thorough examination but they still said and MRI was not necessary but did refer to rheumatology. When he saw the rheumatologist (same one as I'm under) he saw how stiff he was and referred him for an MRI and he had the HLA B27 blood test. The blood test was normal but he had SI joints fused together and rheumatologist diagnosed AS because of his whole picture. Because he has had a mild heart attack he cannot have anti-inflammatories so is now on Imraldi. This does seems to be helping even though he hasn't been on it long (it didn't work for me with inflammatory arthritis).
I've given the background to show how hard it is to get an MRI because they are expensive but you really need one. He couldn't tell the area was fused. I don't know if you could see a private rheumatologist for an opinion and if you needed it he could refer you back to NHS for MRI.
It's so frustrating we have to have these battles. I myself had an awful battle with my GP to refer me to rheumatology and at the time I was just not up to fighting. Good luck - and don't be fobbed off. xxx
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