Does this look like Ankylosing Spondylitis?

[Chancery]

Hi, I'm going to see a rheumatologist tomorrow, after waiting a month short of a year to see them, about muscle & rash problems. In the intervening time, on an improved diet, my rashes have abated to just an itch (facial & vaginal) but the muscle pain is as bad as ever. Today, while getting stuff together to take, I came across old notes I'd made for a doctor's visit and found sacroiliitis, which was listed as part of AS (just learned that abbrev'!).

I'd looked AS up before, because I walk with a curved spine and find it hard to stand straight (it hurts and being bent eases it) but dismissed it. I'm not sure why. I think because my spine isn't fused, as far as I know; I can stand up straight-ish. However, today I saw a little cartoon of symptoms on Google images and I have all the the things they list. Including stomach problems and the aforementioned rashes.

My chief problems are back pain from my neck to my hips, worst across my shoulder blades which just aches 24/7. I also have some concerns with the "gets worse resting, rather than moving" symptom. I have a sort of complex thing that goes on. I get more extensive aching if I sit too long and my hips start hurting, particularly in bed at night, where I'm always tossing and turning trying to get them comfy, but when I exercise I get very leaden and tremendously fatigued. I reach a point where I get what I christened Sudden Fatigue Syndrome, where it's like I've hit a wall, so exercise both makes the pain better AND worse! I also get ataxia when tired and regularly trip and veer off into bushes and the like. Recently, if I get up during the night, I am so 'dizzy' I charge across the room and effectively have to bounce off the walls.

My back pain started in my 20s in the sacroiliac area, which just seemed to be weak and permanently sore. The only thing that really helped it was lying on my back on the floor with my knees up and rolling from side to side. It was as if it massaged what felt like a knot. I put it down to bad posture and 'weakness' but I never really had bad posture. I do now though, at 63, and over the last few years I've become aware of just how stooped my body seems to want to be. I've also 'shrunk' 2 inches, I found out at a recent medical, although I don't know if that's normal age shrinkage!

I also have tendonitis in my ankles, one of which has a hard lump like a bone growth from the pressure of walking on it, even with orthotics, and I have knee pain (can't hunker down) in both knees going back to my 40s and very painful arthritis (so the podiatrist informed me) in my RH toes.

I am wondering now, looking at that lot, if AS isn't a possible diagnosis. I shall mention it to the rheumatologist, if I get a chance, but I've suspected everything from psoriatic arthritis to dermatomyositis to glycogen storage disorders, all the time worrying I'm just unfit!

I should just say I have terrible breathlessness, especially climbing, and it feels very strongly connected to my back. If my back is sore my breathlessness is worse.

And don't know if it is relevant but I have trigeminal neuralgia of some years standing, a type of neuropathy in the face.

If anyone has any thoughts as to the possibility of this being AS I'd be really grateful to hear from you.

Many thanks!

[Fruitandnutcase]

Ouch - that sounds very painful. Have you ever had a DEXA scan to check if you are losing height etc because of osteoporosis or have you had a regular MRI scan to see what is going on with your spine?

[Chancery in reply to Fruitandnutcase]

Hi Fruit, no never had a Dexa scan but the nurse measured my height today as a part of the preliminary stuff and - behold! - I measure 5ft 6" again, which is very baffling. I can only think that when I saw my practice nurse I was in a lot of pain that day and couldn't straighten my spine very well, or she just measured me badly (or got her arithmetic wrong!), but it looks like I haven't shrunk, which is good, but doesn't help me in getting a diagnosis. The doc had X-rays done of my sacroiliac area today so we'll see if they show anything. But basically, he dismissed me as having fibromyalgia and that was it. He did say he couldn't see any signs of autoimmune, so I suppose that's a plus.

[Fruitandnutcase in reply to Chancery]

Maybe you stood up a bit straighter or maybe you were measured earlier in the day when your spine hadn’t compressed during the day - or maybe the nurse doing the measurements had a different technique.

Any doctor who ‘dismisses’ someone as just having fibromyalgia doesn’t realise how painful a condition it is. Hope they find something helpful in your x-rays. I took a lot of stick from my doctor until I was x-rayed and next time I saw him he actually said ‘I owe you an apology’,so your X-ray could throw up something useful because it did for me.

Years ago after lots of sacroiliac pain, my leg felt numb right down to my toes, I knew I could see I was washing it in the shower but I couldn’t feel it, I tried physio, acupuncture, well I tried everything you could think of, then after a few years of NHS and private physiotherapy a nice young Dutch physio arrived at my NHS clinic and decided I had a ‘displaced pelvis’.

She did some really heavy duty manipulation with my leg, stuck some physiotherapy tape on my lower back, a bit more manipulation - which believe it or not felt amazing - she recommended a good masseuse and recommended I take up Pilates to strengthen my core (and started me off while I found a good teacher) and hey presto once I did that I never saw a physio again. So good luck with it all.

[Chancery in reply to Fruitandnutcase]

Thanks, Fruit! My physio told me I needed to strengthen my core. I think I need to get on my own case and start doing back exercises again. I was also thinking of buying a massage 'chair', purely because it would be so good just to have the damn thing 'rubbed better'. I live alone and I think getting 'strokes' from my ex-partner is the single thing I miss most about him, that and sharing anxieties. He wasn't very good with my anxiety, or any emotions, but it still beats stewing on your fears alone!

[Fruitandnutcase in reply to Chancery]

Your physio is right - it takes a lot to beat strengthening your core - just choose your teacher wisely, you want a very small group where you get a lot of individual attention.

The massage chair sounds like a good idea or a massage mattress that you could lie stretched out. I was thinking about those massage things you hang round your neck the other day. Be worth trying your chair out first to be sure you liked it - my car passenger seat can do massage but it’s not really all that great.

Then last night on the phone my grownup cat loving son suggested we get a cat! He thinks I would benefit from having a ‘support cat’. Our last cat and much loved cat had to be put down about six years ago.

Worse still he went on to suggest we re-home an elderly cat from the animal shelter. I did wonder if his reasoning was that an elderly cat is less likely to outlive us or was it that we are so old there’s no point in getting a young cat at our age. 😉

[Chancery in reply to Fruitandnutcase]

Ah, bless, give 'the old lady' a cat. Ah well, his heart was definitely in the right place. Perhaps he thinks an old cat will just want to cuddle his 'old lady' all day and you can both spend the rest of your life canoodling on a sofa! I have to say, as someone your son would doubtless class as an old lady, that doesn't sound half bad. But don't tell him I said that...

[Fruitandnutcase in reply to Chancery]

I mentioned that to him on the phone tonight and he said that he thought an old cat because I had said ‘I didn’t have another cat in me’ meaning at 73 and 71 (me) there’s a good chance my husband and I wouldn’t last for a cat’s lifetime. Our previous cats have lived to be 17 and 19. So it’s not as bad as it sounds 🐈

[Chancery in reply to Fruitandnutcase]

Yes, it definitely IS as bad as it sounds, give him a slap round the ear, affectionately, of course. Don't have another cat in you, indeed. I'm outraged on your behalf! Even at a 19 year lifespan you'll only be 90. My neighbour is 88 and has only recently taken on a dog. A very small, rather old dog, but still a dog. I don't know, young people today..... Live to 102 just to spite him!

[Fruitandnutcase in reply to Chancery]

No, no, it was me who said that to him. He wasn’t being mean. I read a book - a lovely little story translated from French by Antione Laurain, there’s a psychiatrist in it and one of his clients talking about his beloved dog that died, the psychiatrist said to get another dog and the client said ‘I don’t have another dog in me’, meaning (I think) that if he got another young dog he was of an age where the dog would most likely outlive him and he didn’t want to get a pet and then possibly die on it.

Number one son kept saying we should get another cat - my husband doesn’t want another cat, I wouldn’t say no if a stray turned up on our doorstep.

Anyway, eventually I told my son about the story and said that I thought I was of an age that ‘ I didn’t have another cat in me’. So his way of getting round my reasoning was to get an elderly cat

I could do what my son suggested and take an elderly cat from an animal shelter and give it a good life. I think it’s sad though when you look at cats in shelters and their bio says that they have ended up there because their owner has died. I wouldn’t want that to happen to a pet of mine.

[Chancery in reply to Fruitandnutcase]

Ah, he's good son then, and off the hook! But you shouldn't worry about your cat being left behind. Obviously it's not ideal if they end up in a shelter, but as long as they're not there for long, they'll be fine. They're not like dogs, they don't really get attached to their owners. They get far more attached to their homes! It's not because they're evil and cold (I've had cats all my life) it's just because they're cats!

The best idea is to bequeath the cat. If you are leaving your house to someone then they have to take the cat too, so it can stay in its home. Failing that, leave it to someone you trust, who likes cats, and with their permission. It's a sort of living will. That way you get your cat without any worry of what they will do after you shake off your mortal coil.

Of course, you can reach a point where you don't want the emotional responsibility of a pet. I had my last cats about 15 years ago, and they both died in ugly and distressing circumstances, for which I blamed myself, so I've not had the heart to have once since. I have considered a dog though, for company and exercise. It would be my first since my childhood dog, but again, I worry about the responsibility now. Some days I can't get me out for a walk, never mind a dog. That, I wouldn't like to do to a pet..

[springcross]

HI Chancery. I'm sorry to hear about your problems, it seems an awful lot to have to contend with. I have kyphoscoliosis caused when I broke my back several years ago - I suffered two wedge compression fractures to two spinal vertebrae one on top of the other T4 and T5 (in between my shoulder blades) from a high impact fall head-first down our stairs. I know what you mean about the aching from your neck to your hips and worse across the shoulder blades. I used to get aching and itching in between and around my shoulder blades and it would drive me crazy but some nights my whole back is affected - it has been much worse since the RA.

I also know what you mean about the sacroiliac area too as I have had problems with it too for many years. I used to have an osteopath who would sort it for me a real treat but he no longer practices. I tried a few different ones but they were never successful in sorting it so I started to use a chiropractor and had to insist that there was no manipulation or mobilising of any of my joints as whilst I was in hospital after my fall, they found that I also had osteoporosis. I started to use a physio also and he was very good. He explained the itching and discomfort was due to the shape I had become after the fall and it causing pressure on the nerve (I can't remember exactly how he described it and the names of things) but I found that it was affecting my breathing too (I also have COPD) but this was all due to this nerve and muscles around the lung area. He used to massage it and my vertebrae which would make it so much better, the itching would stop and my breathing would improve greatly. The sacroiliac problems were due to my pelvis being out and once it was levelled up it would be fine. My problem now since being diagnosed with RA is that I can't stand for too long in one spot - such as washing up or bending down when cooking stuff in the oven, the aching becomes intolerable after about fifteen minutes and I have to go in and sit down. I haven't been able to get any treatment for it either due to lockdown. I won't go into all the problems I get with my neck and head.

I feel so sorry for you going through all of this and also having trigeminal neuralgia is adding insult to injury as I know that it can be excrutiating.

Have you ever considered seeing a physiotherapist at all, not an NHS physio but a private one? Also, maybe it would be a good idea to ask your GP to Xray your spine as that might show what's going on down there.

I'm sorry about the long drawn out reply but I wanted to let you know that I appreciate what you're going through and I sincerely hope you get on well tomorrow at your rheumatology appointment. Let us know how it goes. All the best to you. xx

[Chancery in reply to springcross]

Hi Springcross! My back pain got a lot worse after an injury too. Nothing like as bad as yours, I 'pulled' my back trying to haul a wheelie bin up a step when it was full of stones. Bad idea. I felt something 'rip' and I was virtually immobile for at least 6 months. I couldn't stand up straight at all, and I could only sleep sitting up on the sofa for three months of that. Every time I tried to lie down my back would go into a terrible spasm.

I did get a referral for physiotherapy but after going twice, or maybe 3 times, I gave up because he was giving me exercises that were unrepeatable in the house (one was a huge exercise ball on the physio couch - I had NO idea how to replicate that at home) and he kept telling me I'd only get 50-80% better, which depressed me no end. I just gave up on it.

The rheumatologist referred me for X-rays today, but he did say that if I had AS there would be fusion of the spine, but I'm pretty sure I read that it doesn't always show, or some sufferers don't always have it. I suspect however if I don't have it that will be written off as a diagnosis. He gave me a fibromyalgia leaflet and muttered a lot (between a face mask and a strong accent I couldn't make out quite a bit of what he was saying) but gave me no formal diagnosis. I think fibro was just his get out of jail free card, which leaves me no further forward.

[springcross in reply to Chancery]

Hi Chancery. Sorry you didn't get what you wanted from your appointment except an X-ray but you never know, it might show something. Have you had a chat with your GP about all your symptoms, especially the awful dizziness you get and explained why you feel that it could well be AS?

[Chancery in reply to springcross]

No, my current GP isn't who referred me. I left the surgery who referred me because they were so overloaded with patients you had to wait 4 weeks, minimum, for an appointment. My new surgery is okay, but I've kind of lost heart in doctors and medicine in general. After today I swore I won't bother going back or trying to get to the bottom of this. It's too difficult, and unrewarding. I'll try and get a copy of the rheumatologist's report after it goes to my doctor, otherwise I'll have no idea what he actually thinks, or if he's offered any kind of diagnosis, or if the X-rays showed anything. (He said he'd get in touch if the tests showed anything, otherwise I wouldn't hear from him, which I've always thought is an insane way of doing things. Your GP knows what the rheumatologist thought, but you know nothing unless you do battle to get a copy of the letter. Why the patient doesn't need to know defeats me). But after that, I'm done. Unless I have something specifically wrong with me that I can point to and say 'Look that's broken' I don't think doctor's visits are worth all the anxiety and frustration they produce.

[springcross in reply to Chancery]

That's a shame, at least I have a complimentary copy of my Rheumatolgists letter that goes to the GP. I hope you get some help with what's going on, it's awful to be made to feel the way you do. All the best to you. xx

[Chancery in reply to springcross]

Thanks, Springcross - and the same to you!

[oldtimer]

Try and group your symptoms together so that when you present them you can do so fairly quickly - I find if there is too long a list, the health professional gets bored and stops listening!

I would avoid calling it 'muscle' pain, in that you are making a diagnosis yourself of what is causing the pain and that may lead the health professional to think along similar lines. Just state where you have the pain, what brings it on and what improves it.

Mentioning that you had thought of AS is a good idea in that it will help them to confirm or refute that for you.

There is a useful page on the NRAS website about going for your first appointment with a rheumatologist.

[Chancery in reply to oldtimer]

Thanks oldtimer. I didn't see your reply before I dashed out this morning, but that's what I did anyway! I kept it to broad strokes with 4 main areas. Unfortunately I did refer to it as muscle pain - I wish I had seen your reply because that was sound advice, but it's done now! I did mention AS and he sent me for X-rays, but only of the sacroiliac area. I thought that was a bit odd, given that the worst pain is in my mid to upper back but the x-ray girl tried to do a larger area of my back when I queried that, so that might help!

However, if my history with years of tests is anything to go by, it will show nothing very remarkable or useful!

In an even deeper irony, I mentioned to him that I had some Ataxia, brought on, usually, by fatigue and that recently I'd been having a sort of POTS thing going on, where if I got up during the night I would be very dizzy and bouncing off the walls, lurching about like a drunk, which, like most of what I told him, he didn't seem to pay much attention to. Then when I got off the X-ray table I lurched like a drunk and immediately started feeling very nauseous and couldn't walk in a straight line. I had to sit down, then sit down outside again and the very nice girl is bringing me water and a sick bowl. Eventually I tried to make it out the hospital and had to try another three times, sitting down, even once right outside the door where some very nice policemen got me water again (and, humiliatingly, a wheelchair!), then I had to do it all again in Waitrose, apologizing and feeling deeply embarrassed everywhere I went. I looked and felt intoxicated. No idea what caused it, or why it was so severe, but it was a shame the doctor didn't see it. Maybe he wouldn't have dismissed me with fibro so quickly!

[Noodles43]

Hi, I was diagnosed with AS about 23 years ago and it does sound like it’s a possibility that you have it. I have related IBS and also crumbly hips as well as pain in various joints and muscles constantly and extreme fatigue plus a few fused joints (lower lumbar region and a couple of toe joints) The rashes come and go but are very minor for me. They may test to see if you’re HLA -B27 positive to aid in diagnosis, it’s not a foolproof gene marker but is commonly one.

Good luck with the diagnosis and I hope you get the treatment you need swiftly, might be worth looking at the NASS website for more info on AS 😊

[Chancery in reply to Noodles43]

It's very interesting that you mention toes, Noodles, because although I'd had pain in my RH toes for at least 10-15 years, I never thought of arthritis or any formal problem. They were just my toes that hated heels. It wasn't until I went to the podiatrist for tendonitis that one of them said I had arthritis in my toes. I said "Do I?" and she said "Yes" and asked me to bend my toes up and I discovered I can't. They're completely immobile, which kind of suggests 'fused' doesn't it? But the rheumatologist didn't check that or ask me about it. He just accepted it as arthritis. I wish I'd thought to just say 'I can't move those toes upwards', although I still doubt if he would have checked them. He would probably just have trotted out fibro regardless. I wish they had checked for the HLA gene, at least I'd have felt more confident of his fibro 'diagnosis'.

[Noodles43 in reply to Chancery]

Just keep on at the rheumatologist for gene test, spinal, sacroiliac and foot MRI as they show the problems much better than X-ray. I’m sure my dad has AS as well but he’s never been diagnosed, he had a slipped disk about 40 years ago and everything is attributed to that now, he doesn’t make a fuss so he’s just ignored by the health professionals. I think I was very lucky in that I was 21 and my symptoms were sudden and I got diagnosed within a few months.

Wish you all the best,keep battling on!

[Chancery in reply to Noodles43]

Thanks, Noodle, but I imagine I have already been discharged from the rheumatologist's care so I'd have to wait another year just to disagree with him. I do wish now, the day after, that I'd been less passive and asked him if he was actually diagnosing me with these conditions. Also that I'd been more proactive about treatment (he mentioned a drug called Duoexcitine - something like that, an antidepressant, I think) and that was it. Today, back burnt up with pain, I'm wondering how I'm going to get through this with no help, ever, and wonder why I was even sent to see him, since my pain never even came up in discussion, let alone any notions for what I could do to help it. I feel I wasted the appointment. He was a bad rheumatologist or maybe just a bad doctor, vague and uncommunicative, but I could have done a lot better, asking him directly what he was going to do for me. Instead I just sat there and let him mumble vaguely at me through an unintelligible mask.

[Chancery]

Thanks, Whaleroad. The rheumatologist dismissed psoriatic arthritis because I "showed no signs" (from a physical exam; not sure what signs he was looking for) and I suspected AS would be dismissed because of my age. He said quite plainly that unless I showed signs of a fused back I don't have AS, but as I mentioned up above somewhere, I did read that not all AS sufferers have fused spines. I may just have those fused toes! Or nothing fused at all. Yet. And funny you should mention the flat feet. When I went to the podiatrist I discovered my then GP had said I had flat feet. The podiatrist said he was wrong and I didn't but it didn't mean anything anyway. Even athletes sometimes have flat feet.

And nice (although not for you!) to meet a fellow TN sufferer. I must admit I did wonder if the TN was a qualifying symptom for AS simply because there's a school of thought that spinal compression might be one of the things that causes TN because the nerve is being trapped by the cervical spine, if I remember correctly. It seemed that AS might cause TN, either directly or indirectly, if that theory was correct. I know not all sufferers have a vascular loop (I don't) and they are 'unknown cause' cases.

The rheumatologist half-heartedly diagnosed me today as having fibromyalgia (the diagnosis that means 'we don't know what's wrong with you'). I was on the fibro forum a few weeks ago, asking if they thought I might have it, and was told that generally you only get fibro as a diagnosis when all other avenues have been explored. Well, as nothing has been 'explored' for me I guess that means I'm getting written off early. Lucky me. He did also do X-rays, so, if I'm VERY lucky something might show on there. Although it's a very backhanded kind of luck, at least then I could maybe have a diagnosis of something concrete, which might even have a treatment.

[Chancery]

Sorry, WH, forgot to ask, do they know why you had just a few TN attacks? Did they tie it to anything or give you any idea of what caused it? I had it full pelt for 14 months, but it was 'cured' by B12 injections, something I had discovered for myself and had to break my doctor's arm to let me try. I still have it as an underlying condition, but I still get B12 shots, so I very seldom get shocks nowadays, and NOTHING like when I had it severely. I couldn't eat when I had it first, before I was medicated, and lost a load of weight. Then I had an allergic reaction to the medications, with rashes, ataxia, migraines, nausea, hallucinations - the full monty. Never have I been so glad to come off a medication!

[Chancery]

No, no further appointments, I'm afraid. Never a good sign. He said to me that if there was anything wrong on the spine X-ray then he'd be in touch, otherwise they'd just write to my GP. In other words, 'you will never hear from us again, and will know nothing unless you actively pursue your GP for a copy of the letter'.

And yes, your bulging discs are definitely interesting. There's a whole sub-group of TN sufferers who believe it's a cervical spine issue and they use chiropractor manipulation to treat it. There are some personal anecdotes out there of people who have either gotten relief or even been cured by it. Because I had severe TN for a long-ish time I was a member of all the forums I could find (not a lot!) and I used the Facial Pain forum, which had a lot of American members. The notion has more traction there. And who's to say they're not right? As yet, no-one knows what causes TN, and as I said, not everyone has the vascular loop that allegedly causes it, so it patently doesn't 'cause' it! That could mark your disk problem as chief culprit right there. Something to look at if and when your TN comes back anyway.

[Chancery]

Thanks, Whaleroad. And yes, the cervical spine compression theory is definitely contentious, and there are a lot of warnings out there about not letting anyone manipulate anything in your neck - with good reason! But it is an interesting theory. Maybe some day something useful will come of it.

Thanks for all your help - I appreciate it. X

[Wobbies]

Hi Chancery, you could have been writing an exact description of me! Last year I was diagnosed with Axial Spondyloarthritis after being fobbed off for years. My rheumatologist is great and said all my symptoms including the trigeminal neuralgia were clear indicators. I also have IBS and he said that they know that gut disorders and inflammatory arthritis are also connected. After being fobbed off, getting a diagnosis brought such relief. In fact to my shame, I cried, so good luck.

[Chancery in reply to Wobbies]

Thanks, Wobbies, I hadn't heard of that. My rheumatologist was not remotely interested in my having TN. Actually, he wasn't really interested in anything. I assume he'd gone into the work because it was a well-paid profession and would make his family proud. Unfortunately his professional status doesn't help me any; some actual involvement in what I was telling him would have been more helpful.

Can I ask how your illness progressed? How did it first present itself and what were you being told? If you don't mind telling me, I'd love to know what your symptoms were and how you finally got diagnosed. What changed - assuming something did - to make them diagnose you correctly?

[Wobbies in reply to Chancery]

HI Chancery, long story. Firstly I was dismissed by GP. A year later saw another GP who diagnosed polymyalgia and gave me steroids. They worked for a month and then I started to deteriorate. Went back to the same GP who just shrugged his shoulders and told me to increase steroids to a level where I felt OK! Went back 3 months later, saw another GP and begged for rheumatology referral which he gave me. Rheumatology rejected the referral so saw yet another GP who re-referred me. 9 months later I saw a registrar rheumatologist who just dismissed me, told me to stop the steroids and inferred I was imagining it! So depressed I looked for a rheumatologist privately. Found the one who had seen my sister and diagnosed her on the NHS. Showed him the letter from the NHS rheumatologist and told him that I thought she had confused me with another patient. After listening to me and examining me and hearing about family history, IBS and neuralgia pain, he said I want to see you on the NHS as clearly you have some form of inflammatory arthritis and I need to get you sorted out. Best £250 ever spent. He wrote to my GP requesting a referral who did it probably fed up with me and glad to get rid of me. It means that I have to travel 70 miles to hospital instead of 30 but I would travel anywhere to see my rheumatologist who is the most caring man, great listener and always takes time to hear the answers to his questions. Means he is always running at least an hour late but it is worth the wait. Sorry it is such a long story Chancery but it all took ages, but in the end I got to someone who was interested in my case. So, persevere even though it is easier said than done. Wish you all the luck in the world.

[Chancery in reply to Wobbies]

It's like a template story, isn't it? Particularly for women. Even women doctors dismiss women's problems as if they've just adopted the male doctors' behaviour towards women's pain. We're always imagining it/being hysterical/overreacting. And how awful that you had to go private to get heard, but at least you got a good result. I've read of many people who spend a small fortune on all manner of specialists and practitioners but who don't get much better results. How sad is it that I feel genuinely thrilled for you? Result!

I reckon they should pass a law saying you're allowed to sue doctors who have dismissed you, if you are later shown to have a condition that they've missed. Can you imagine the lawsuits? It might wake their ideas up a bit if instead of dismissing you meant being shot of you, dismissing you meant they could find themselves in court or struck off.

Yep, any politician who suggests that has my vote!

[Chancery in reply to Wobbies]

Sorry, meant to ask, if it's not too nosey, how old were you when the pain/s first started and how old when finally diagnosed? And steroids - they were both fabulous and awful for me. I was prescribed a short 5 day heavy dose (8 tablets a day) course and they were AMAZING! I do not exaggerate. First time I'd felt like me, like a functioning human, since my forties. All my aches and pains went away, I could stand up straight, and most amazing of all, it was like a veil lifted; I felt upbeat for the first time in years. Two days in, I had a big red balloon face, but they were still worth it. As soon as they stopped all the pain came back, plus I started having repeats of the red burning face, then the rashes came and I had them for a year - possibly triggered by the steroids, so they were very much a mixed blessing for me, but I did love those five days of feeling like my old self.

I used to tell docs how great they made me feel becasue I felt it proved there was some underlying issue, otherwise why did steroids change everything so much? But no-one was interested so I stopped bothering. Story of my life...

[Wobbies]

Am happy to tell you that it first started when I was 39 but was fobbed off until at 66 I decided it was affecting me so badly I could no longer adapt my lifestyle as had got to the stage that I could hardly walk. The steroids were miraculous at first for me too. I could do everything that my body had not allowed for years, but then the effectiveness started to wear off and when I tried to reduce could not get below 15mgs. after starting on 20mgs. My lovely rheumatologist says that X rays are useless as they do not show up inflammation, only damage and everyone over a certain age will show up damage. He was surprised that the first useless rheumatologist had only used X rays. In fact, he says that you can't rely on tests, you have to listen to the patient who through the description of their pain, fatigue etc. will give you the diagnosis. Great man.

[Chancery in reply to Wobbies]

So you didn't fit the profile of it (only) strikes youngsters, since you were only off forty by a year! But it is positively shameful that they left it undiagnosed for so long, and doubtless that's what caused them to disregard it as a diagnosis, since you were, by then, 66. I'm telling you, we need to start suing cavalier doctors!

Well, the very best of luck to you. I hope this is now a journey towards wellness for you. X

P.S. Just editing to add - I thought that about X-rays. They didn't X-ray the bit of my back that was actually sorest, and I thought 'this will only show bone damage, and of a bit of my back that isn't as relevant, at that - it will tell them nothing about any inflammation in my back'. I couldn't fathom how that was useful to me. It was only useful to them, in that it let them dismiss me having possible AS.

[Wobbies]

Chancery, my heart goes out to you as I know how totally devastating it is to be not taken seriously as it leaves you without hope of improvement. If I had known what I know now, I would have pressed harder earlier. Mind you when I was 39, treatment was not so advanced. So, don't let them fob you off. Insist on a second opinion if necessary. It is worth it. Take care. X

[Chancery in reply to Wobbies]

Thanks, Wobbies - and the same to you! X

[Brychni]

sounds like me - all kicking off really badly in the last few days.

[movinalong11]

So many of your symptoms sound like mine, and I have been diagnosed with AS, as well as Fibromyalgia, Rheumatoid Arthritis, Sjogrens, and a couple other things. Most days I have pain everywhere, especially my upper back, lower back, hands, rib cage and feet. The pain in my upper back burns like fire when exercising, walking for any length of time, but especially when slightly stopped over a sink for even a minute. I have trouble sleeping, lots of nightmares, teeth grinding (severe TMJ) and my memory and concentration are almost non-existent. I will be 67 years old, and have always looked many years younger, until my doctors started diagnosing my aches and pains in 2015. Not anymore, I look my actual age now or older. I feel for anyone who have ANY of these diagnosis!

[Chancery in reply to movinalong11]

Yes! That's exactly what I have, and burning like fire is a very good description of it. Some days it tingles as well, particularly if I've taxed it for a long time. Since posting the original post I've had an EMG and nerve testing and I was cleared for dermatomyositis. The neurologist ( I assume he was!) said my muscles were fine but just when I thought I'd got a clean bill of health he said I had hyperreflexia and it indicated I might have a compressed nerve in my spine.

I didn't look it up until I got his report sent through but when I did I discovered it's myelopathy I (might!) have, and found it very depressing. It's odd becasue I see that I mentioned compression of the spine in this post! It's also interesting that I asked him if it might have a bearing on my TN and he said no, it was a different kind of compression, but again, having seen what I've written here about some people's theories that it might be connected with cervical compression, I'm wondering if he was just thinking of the vascular compression that's trotted out - and unproven - with TN.

Anyway, I've been referred to a neurologist and for an MRI. It would be deeply ironic if my TN in 2014 was actually a forewarning of this possible cervical compression. I might have been able to do something to help it if I'd known then, but that's the NHS for you - they only focus on the thing in hand and never look a the big picture.

Incidentally, it was me who demanded these tests. The rheumatologist had thrown me out. I wrote him about three angry letters and we had words and he gave me these tests, in the most patronising nad condescending way possible - and lo and behold I do have something wrong, not that he'd care or change his attitude. Sigh....