Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help! Not getting anywhere!

After finally getting my diagnosis and an explanation for why I've been feeling the way I have for many years, I am at a standstill.
Firstly, I have been given nothing but slow acting anti inflamatories (which I was on before diagnosis when RA was suspected),no physio and no follow up appointment until July. In the meantime, I continue to struggle and constantly fight tiredness and pain and seriously worry about losing my job as a result of poor attendance and performance. I do not seem to be getting through to any of the doctors about just how critical my job situation is.
I have been off work the past week after collapsing last weekend and having severe pain in my ribs and sternum area (and to a lesser extent in my lumber region and buttocks). Despite going twice to the doctors and phoning my rheumatology department (and speaking to the nurse), all I have had is some more painkillers (which don't seem to be doing anything). Yet blood tests taken last week do not show any 'inflamatory markers raised' and told it's just muscular. My GP hasn't even got the official diagnosis yet from the hospital and doesn't seem to listen when I tell them I've been diagnosed with AS. How can this be? I face the prospect of having to return to work tomorrow not much better than last week and barely being able to drive there with the pain. What can I do???

Hi ya,
I'm sorry to hear about your problems it seems to be the way it works in England everything can be so slow. You have to put more pressure on your Rheumy keep being a pain untill they listen to you and what you're going through. Get your Doctor to chase the Hospital for your diagnosis.And ask him for stronger pain killers to see you over the waiting time.

Kevin

Alibat - sorry to hear this, but same scenario can happen - anywhere!

Don't know whom you are seeing, but in the UK the biggie drugs are beng held back on due to expenditure. Don't expect too much from the hospitals over there... You 'have' to go through the more modest drugs first afore you are even given a sniff near to the bigger drugs. Fact.

So, one starts off with the NSAIDs, which tear out the lining of one's guts and one ends up with gut problems and gut lesions etc etc for life.

After which, one is put on the DMARDS - which don't work that well and 'can' have horrible side effects.

Having gone through those one is grudgingly put on the anti-TNF drugs. By which time one is in agony, nothing works - and one is throwing side effects to 'what' one has been put on like no tomorrow,

Don't weaken man. Take a look here at the LSD/NSD forum (diet refers) and ALSO at the LDN approach, alternatives forum. Might find summat there that will work for you.

As for the physio. Hospitals are solid with physio appointments. You'll be lucky to get a look in. Suggest:
1) find out IF your local hospital runs physio *evenimgs for spondys (many do)
2) try to find a Pilates with a *qualified instructor (ensure *Qualified) who will take into accuont yr being a spondy
3) *if you can afford it, find a pvt physio who will take you through exercises apapropriate, which you can THEN do on your own account
4) don't forget to stretch - every day. Stretching is **important. Stretching exercises here on KA - put in a search. Cindy posted them 3/4yrs ago. Otherwise go to the spondy Association websites (UK/USA etc) and download the exercises they suggest for spondys.

Rib and sternum pain. Equates with being a spondy. Think most of us get the rib/sternum pain. Sigh. Yea. B....y painful. ONLY way through that pain is by stretching.

Take care though. Only EVER exercise 'to' the pain, not beyond it. OK?

Know that others will be piling in to help you soon - Nth America and rest of world is just waking up!

Take care

so sorry

think i gave you all my ideas when we first met (in your first post).
i do understand what you are going through though, something i can relate too, unfortunately.

just looking through that first thread, don't think i mentioned some of the things that have helped me a lot, so will list them here:

ice, ice, ice- gel ice packs, ice massage, CVS artificial "peas"
heat-heating pad, hot showers, hot bath, paraffin wax bath
contrast baths for hands and feet
muscle relaxant zanaflex
PT
ultrasound
trigger point injections
NSAIDs but can't take
not sitting, not standing
good bed, swopper chair, foam pad to stand on, flipflops in shower, etc

Some of the "inflammatory markers", like complement split products, will not be elevated if your immune system is abnormal in certain ways. Like if you (like me) have an IgG deficiency. I was being told repeatedly I couldn't be sick because my C6 levels were only borderline. That whole complement cascade starts with IgG, so if that's low - all the rest is, too.

At least mention to them - if you ever see them, (that's an attempt at black humor) that primary immune deficiencies have been reported in SpA, if borderline, there may be no strong history of infection and a dampened elevation in inflammatory markers.

Thanks for the advice everyone.
I'm seeing a general rheumatologist at the moment but wondering about paying privately to see an AS specialist to get things moving. Does anyone in the UK have any recomendations? This is how I finally got my Dx, after 20/25 iritis attacks I paid to see Prof Ayliffe in London after getting nowhere with my local hospital. It was he who pushed my GP to refer me to a rheumatologist.
all the best
alison x

Hi Alison,
Just a thought, about your tiredness, nobody has mentioned vitamins on this thread yet. As spondis, we are notoriously low on vit D, so thats a good place to start, you can take 1000iu a day without any concern, also worth getting some vit c 1000mg a day, the b vits are very good aswell, esp niacin, much written about this one helping us, without these daily i feel the strain. Another good extra is the omega oils, i dont know about the fish types (i take pure hemp oil) but there are some good threads on here about these, not only do they help your bones, they work wonders for your mood levels. I also take a herbal anti-flam called bromelain complex as i was in same situation as you, on anti-flams for years before diagnosis, now concerned about stomach. The bromelain is a mix of pumpkin,flax,alovera etc, if i dont take it for a few days, i start crunching all over so i know it does good.

And lastly, i cant emphasise enough, what everyone else has said- stretch, first thing, last thing, lunch time, whenever you can fit it in. if you can ask your doc for a referal to the 'Bath A.S course', they will teach you everything, they are angels, do a search of the posts i have written previously and you will see all the info.
Hope this helps, glad you have found this place x

Hi Alibat,

They are giving you antiinflammatorys yet your tests show you aren't "inflamed"?

As a NON Doctor or medical person (just wanted to put that waiver in), could it be fibromyalgia? It causes me similar pain and fatigue, and it was only once I started taking Lyrica that I got some relief.

Regards,

James

Oops sorry mispost =(

Yes, my last tests showed I wasn't inflammed (after saying that in the past I had tests that did but nothing was done). As for fibromyalgia, I don't know if I have this as well as AS. My X rays do show AS as clear as a bell though.