Hi Its been a while since I last posted sorry but I am not getting any advice on the NASS UK forum website so remembered about this site and thought it well worth a try as in the past you have been quick to respond and very helpful.

Anyways I have had AS for many years now and was coping with it quite well, I hadnt had a bad flare up for 3 years.

However in the past month perhaps 2 months I have been in pain all over my body. It's hard to describe, the closest I can get is like pulled muscles but its especialy painful in my shoulder and rib cage area. When I was diagnosed I only suffered problems with my lower back especialy sciatica.
I now get numbness in my legs quite regularly and find sitting quite uncomfortable whatever type of seat I try. The same with sleeping. I sleep well but do wake quite a few times during the night and it hurts to turn over but I have to as it hurts to lie in the same position too.

I ache constandly and even though I try hard to get on with things the pain and discomfort is now becoming more noticable. Even the Naproxen I have been taking for many years doesn't seem to be as effective, it just takes the edge off the pain doesn't stop or ease it much. I used to have a diclofenac for the inflamation as well but they stopped prescribing that for some reason a few years ago.

Finally I have noticed a small hard lump under the skin on my left hand side of my back toward the base of my rib cage, it feels hard and solid rather than something pliable. I have also noticed my bones seem to click and crack a lot more often, especialy in my lower back where it sounds like a stick splintering!

I am also very tired all the time, wondering if this is because my body is having to cope with the AS pain overload or is it something else going on.

I know this is a silly question but does this sound as though my AS has got much worse? Do I have to see my Dr for a referal to the Rhumatologist or can I book an appointment direct with them?

I know I am overweight so am a bit aprehensive about seeing the Dr as assume this is the first advice they will send me away with to lose weight. I lost 2 stone up to the spring this year but had to take a break from the local weight loss club due to no transport. Since then I have put 1 stone back on and am now desparate to get back into the habit and lose the weight again as I had noticed it helped me feel better in general. Although I am sure it cant just be the additional weight thats making me feel so bad surely not with the other symptoms that have occured over last 2 months?

Thanks in advance for any advice.

First off: That lump needs a doctors eye. Simple as that. It can be any of a variety of innocent things, but do have a doctor to look at it just to make sure you are not missing out. Also that will take the worry out of it.

Muscle spasms, and muscle aches are very often a natural result of inflamed joints. When your joints become inflamed, they tend to drag with them inflammation of tendons, and there you go: Perfect evil circle. The body will of course try and compensate for pain with your muscles, and they get to hurt, and thats besides the actual inflammation itself. I have so often seen people here that struggle with night sleep as the pain is often worse at night, mornings and evenings.

I would look at these things:

Do you flare, or is it a constant level of pain?
Will activity make you feel better or worse?
(activity adapted to pain level, that is)
Try if heat or ice helps!
Does the pain seem to be from specific areas like hip/joints, lower spine, mid spine, neck, ribs etc, or is it juts general pain?

In any case, do contact a doctor! -You should not stand alone with this, you need advice, comfort and medical assistance. Try if he can help you get a team of medical professionals; physical therapist, GP, Rheumy, etc.

I wish you a lot of improvement and fast!

-Oh and not to forget; The NSD diet really could do good things for you on both fronts. NSD helps a LOT of AS patients with their disease, and in addition a controlled diet would make it easier on your weight (but above all and way before anything; Your weight is not who you are. Real people that are worth your time couldnt care less what you weigh! (apart from the actual benefit of better health if it gets down).

gilth

Hi and thanks so much for the reply.

Its always nice to have other peoples perspectives especialy from fellow sufferers.

The pain is there all of the time but some days certain areas do peak with certain movements.

I used to notice it in my lower back, I still do, but more recently I have noticed it in my shoulder blades, neck and rib cage area.

I dont exactly do dedicated exercise as I find most is too much and although I might enjoy it at the time I will suffer for it the day after or a week later. I do try and be active to keep myself moving but of late have very frustratingly lost motivation due to the pain threshold decreasing (I used to be able to stick with it but now I have moved into middle age my tollerance levels seem to be slipping fast ) I try and walk a little every day even if thats around the supermarket or town window shopping. Shamefully it is no where near enough and I am aware I am going to cease up a lot earlier than most which in itself is a scary thought.
As you say though the pain from staying still to the pain from moving too much is a viscious circle and I cant seem to find the right ballance.

I have transport difficulties as I dont drive but would love to find a way of getting to the swimming pool.

Heat often helps but havent tried ice yet. I do enjoy a nice soak in a warm bath at least once a week. I also have a back heat pad thing which I plug in and it keeps a gentle warmth with 3 heat settings which I also use in winter to keep warm rather than spending too much on the heating!

I will make an appointment soon, I must be due to see my rhumy soon anyway as its coming close to a year I think since my last check up. Hopefully its sooner rather than later and this year he will do more about it than offer me nothing.

Where can I find more info on the NS diet? I am considering a No or Low carb diet for my diabetes control (I have type 2) so hoping the 2 are compatible!

Thank you again.

Definitely get back to the rheumatologist. You are really on minimal treatment there. My guess is that the reason they stopped prescribing diclofenac is that you shouldn't be taking it at the same time as another NSAID, which naproxyn is. You could theoretically take two different ones, but you'd have to be certain that you didn't take more than the maximum daily dose, and that can be much more difficult to work out if you are on two different ones (that are different strength, so have different daily doses).

I'm not sure if you would need another GP referral. Depends a lot on which NHS area you are in. Easiest thing to try is to phone up rheumatology clinic secretary and see if you can get straight back in. If not, then they will probably tell you to go back to GP and get a new referral.

Not sure about the lump. Its probably something that the GP could check out. I know I do get really intensely hard knotty bits of muscle when tendons/enthesitis is inflamed. Because you can get inflammation in those rib cartilages and tendons, it could be that, but definitely worth getting it looked at.

Pain can make you tired. It sounds like you are having a flare up, but given that you really are on minimal treatment, I think you need to go have a serious talk with your rheumatologist and specifically ask what else can be done. Sometimes with the NHS you do have to be proactive in asking for more help - otherwise they can just tend to let you disappear into the woodwork,as few places actively follow you up.

of course we're all different, so i can only share my experiences.

in the fall 2009, i was so bad, we contacted human resources to start planning for short term or long term disability. i had gotten so so much worse. horrific for 3 months, then "healing" for the next three. then pretty good for the next 6 months. thought the worst was behind me, though had no real idea what it was that was so much worse than normal. well, when it hit me again in the fall 2010, a chiro told me that my ribs were "out" and the shoulder blade and ribs were pressing together with nerves trapped between them (no wonder i was in so much pain!), he pressed gently to release them and it was like a miracle. my body and he kept fighting with one another, but finally i was over the flare and they stopped doing that. now, when i flare, if my upper back is so much worse than "normal", now i know what it is, and i have someone that can help me with it. no one here was able to tell me what it was while it was happening, but once i told people what the chiro told me, a number of people chimed in that they had the same issue and PTs had helped them with the same thing. so now i know its one of the odd things that can happen to some of us. and when it happened, it was the kind of pain you just can't explain to anyone; its in a category unto itself. i felt bad all over, was exhausted. wasn't digesting my food. my heart was pounding. it was scary. and yet, i did find help.

i have bone spurs in my neck. they press on nerves. they cause muscles to spasm. the spasms cause trigger points to form. since 1998, all the doctors and PTs kept telling me it a was a problem with my back. and they kept trying to treat just that. but no wonder it wouldn't resolve. last year, when in a flare, my chiro told me, "i think you've been misdiagnosed and mistreated all these years." and so i saw someone about my neck. he injected cortisone into the cervical facet joints (where the bone spurs are) and that helped so much. he also wanted to do a series of trigger point injections in my upper back and upper trap area near the base of my neck to help resolve things further. he did and i must say, though not perfect, my neck and upper back haven't felt this good in years, maybe longer. and yet, prior, the doctors kept telling me there was nothing that could be done for it. long story short, never give up searching. never take no for an answer.

the other thing that finally happened, got into the good rheumy's office. and now he has me on supplements no one ever had me on before. and he let's me have methylprednisone (that i use in a 6 day taper like the dose packs) and i've used it twice now in a row, for a flare in march and then almost 3 months later. and both times it was miraculous. if only someone had let me try prednisone sooner, like a dozen or so years sooner, i could have prevented a lot of pain and suffering, wouldn't have almost lost my career.

i still flare now, but am so much better in between flares, and with the pred, have been nipping flares in the bud before they escalate.

so, get back to the rheumy. let them know how bad you are doing. a good doctor won't make you feel guilty about your weight. they will be motivated to help you regardless.

when i flare, i get really constipated, my gastritis flares, i hurt all over, am so so tired, SI joint flares, neck and ribs flare, tendonitises flare, mouth sores, eyes get dry, sometimes i get weird skin rashes. and within a day or two, the pred clears it all up. if its a moderate flare, the pred makes it go away, like in march. if worse, after the pred, i might still be suffering, but a lot less, at least that's what happened in may, for the next few weeks, my SI was still a bit cranky. now even it has settled down. and yet, i'm well aware of the dangers of pred as well. a double edged sword. but this rheumy has me believing that for most people, a short course of pred once in a while is ok. and i'm monitoring the things that pred can affect, like my bones, just to be safe.

but there are other options too. not saying the short course of pred is the only way, but boy, for me, does that work, short term. if i flare more often, i'll have to try sulfasalazine or a biologic.

as others said, you really are getting minimal treatment. maybe that's all you needed in the past. but sounds like you need more right now.

and, the thing that always surprises me, since 1998, no matter how bad i get, and there have been a few times that i was on the verge of losing my career. but no matter what, once i find the right doctors or therapists, etc. they really help me come back from the brink. so i think they can for you as well.

so sorry you are doing so poorly. call the doctor and get in ASAP.

as for as that lump. my husband gets these benign cysts. they are really truly nothing. but you know lumps can be far more serious as well. so get it checked out.



as others suggested, i use heat and ice during flares.