Confused!

AndyMaz

Went to see the Rheumy yesterday for the results of bloods and MRI scan. He told me the scan hadn't shown up the inflammation "he was expecting", but my blood has the HLA-B27 gene.

Then he booked me an appointment for the Physio in April :shock: and sent me on my way. No pain relief, nothing.

Do I just go back to my GP or get some ibuprofen from the Pharmacy... :?: :?:

He's made me feel as though I'm some sort of hypercondriac

AndyMaz

lol, it was the 2nd visit.

So my GP diagnosed probable AS, referred me to the Rheumatologist. The Rheumy clinically diagnosed it and now I'm being referred back to the Physio in April.

Guess I'll make an appointment with the GP for pain relief cos I'm still in a great deal. It wakes me up in the night most nights.

barbara12

Hi Andy
There are so many of us on here that have had a battle with our GPs,they dont seem to take arthritis serious enough if you ask me, I never visited my gp till arthur came along so he knew I wasn't just seeking attention , it took 5 visit before he referred me to a pain clinic.
Even now he is a bit submissive, so you must bite the bullet and try and get across how bad the pain is..not easy because they dont have it.
You will probable get antiinflams and cocodamols but every GP is different
I do hope you get some help very soon, especially with the sleep x

AndyMaz

All he kept going on about was injections, and I don't want those

dreamdaisy

Sometimes treatment options are limited and what we would prefer may not be possible. What kind of injections is he suggesting? Steroid? They can be very effective and some can gain a few months of relief. DD

AndyMaz

Not sure, all he wanted to do was refer me for "sacroiliac injections". My BIL had them and made him worse, he's warned me off them.

dreamdaisy

That was for him and he is not you. We all know on here that individual reactions to meds vary as widely as we do: there are quite a few on here who are doing wonderfully well on stuff that has done nothing for me but so what? I've had no joy from steroid injections (well, let me qualify that, three days of less pain then all returns to normal) but others have a very different experience. None of us know what will work or not until we try it - and that experimentation can take a while.

Arthritis in all its forms does compromise our lives and sometimes it's very hard for us not to compromise things further. Try not to dismiss the injections out of hand - I'm sure they've helped people on here, have you tried a search to see if there are some positive posts about them? DD

AndyMaz

So I guess I just have to keep going back to my GP until the end of April when my Physio appointment is.

stickywicket

April seems a long time to wait for physio. Can your GP arrange some sooner? Or, how about a private visit, just to get some exercises? Or, check out AC's booklet on 'Exercise'.

Jabs work for some and not others. I haven't needed spinal ones but I've always loved them in knees and shoulders.

LignumVitae

Hi Andy

Confusion indeed! I think it is worth talking things through in detail with your GP. I have the HLA B27 gene and I also have problems with my back but my scan, whilst showing damage did not show active inflammation. My rheumy felt that could be because the scan was taken when things were calm (it was ordered when I could barely move and then the appointment happened when I was at the best I had been for years, typical!). I do, however, have issues with other joints such as my hands, feet, ankles, wrists, shoulder and neck which indicated that things were occuring and therefore I am treated as an inflammatory arthritis patient which seems to class anybody who's arthritis flares, who doesn't have the Rheumatoid factor and who basically is yet to display a definitive symptom that will classify them into a particular type or group of arthritis (I may be wrong there but that is how I understand it). Physio, particularly hydrotherapy did a great deal for me in that it taught me how to control my joints better so I think that may really help you regardless of what the diagnosis.
I had a rheumy at the beginning of my treatment who hung everything on blood tests and sent me away as having hypermobility syndrome and so got myself an appointment with one of the three specialists in the country treating that. He took one look at me and declared the diagnosis as partial and thus began a long process of working out what else was going on based on my symptoms and blood tests during a flare. My treatment has always since continued on that basis. I wonder if it is worth discussing with your GP a different rheumy? Possibly as well keep a log/ track of your symptoms to see if there is variation because it was the vast variation between my good times and bad times which led to further investigation for me.
Sorry for the long one and let us know how you go!
LV xx

AndyMaz

I have terrible trouble with my right shoulder. The pain can be excruciating at times and feels almost constant. If I roll onto it in bed, that's it, I'm wide awake.

8 times out of 10, when I wake I have extreme pain in my thoracic spine. Almost like my ribs want to burst out of my back. The lower back pain is always there pretty much, grown used to it after 12 years.

Problem is I didn't tell my Rheumy half these things because he was so bloody intimidating. I went to school in the late 70's/early 80's, and if you can imagine headmasters back then... it was like that

LignumVitae

Even with the nice rhemys I often find myself sitting there, playing it all down and telling them I'm not too bad. Them I come out and wonder where my brain went for the duration of the consultation. It sounds like you have a great GP, I think it might be worth explaining that you were intimidated and missed off your list of symptoms -take that with you when you go.

Over the years, I've learned to write down the key things I want to get across and it really helps with the intimidation/brain freeze moments. I'm currently spending lots of time talking to midwives and obstetricians, they are a lot more understanding of the brain freeze moment and it has been noted that I'm quite easy to deal with in a consultation because I have my list of things I need to remember and we all get a lot further than we could...it's paid off in more ways than just managing to communicate with my rheumy!

AndyMaz

Glad I'm not the only one

Even if I list all the symptoms he still didn't find the inflammation he was looking for. So I suspect his opinion wouldn't change.

What I'm going to do is just sit tight until the physio appt, then make sure I tell her everything. I'll keep going with the painkillers in the mean time.

AndyMaz

I've been having an absolutely horrible time since yesterday. My lower back is so painful and stiff that I can't wash my feet in the shower or put my socks on. I've had little sleep and I'm experiencing a bout of diarrhea

On the bright side the pain in my shoulder seems to have lessened.

Rewter

From one Andy to another Andy, I can say that I understand where you are coming from and you have to perservere with the doctors.

I too feel like I have to keep pushing them and get the impression they just want you out of the door.

"My lower back is so painful and stiff that I can't wash my feet in the shower or put my socks on"

This I can totally relate to. I have this problem. I have OA of the hips but have very bad aches and stiffness of the lower back. The Rhumy advised via xray that I have wear and tear in the lower back and passed me off to a physio! See the trend?

However, when the report went to my GP, it said my back was normal!!!!

Hang on in there and push for a resolution.

AndyMaz

Just wanted to get things off my chest. Feel quite alone with all this.

dreamdaisy

I can understand the feeling alone - I had years like it before I found here. You are 'alone' but not on 'your own' as we are in an informed audience and can truly empathise.

Having an intimidating rheumatologist is not a recipe for success so try this tip: when he's being intimidating imagine him sitting there wearing nothing but his pants and - yup - he's a human being just like you. He can't help that much if you don't tell him everything that is affecting you, and don't preclude his judgement on matters because he is the one with the knowledge. Knowledge can only be applied to your case if he knows what is truly happening. I tell my rhuematologist everything (whether I think it relevant or not) so that she gets the full picture and she can sift the wheat from the chaff.

Keep talking to us, Andymaz, 'cos I hope the better we get to know you the more helpful we can be. As for the socks thing there are aids to help with getting those on, they have been discussed on here and there are variations on the given theme available. There are gadgets to help with all sorts of probelms we face, my key turner is useful, my ring puller too (but that's been mislaid by Flo just when I need it! Non-cheffy men and kitchens are not an ideal mix. :roll: ) Take care and please let us know how you are getting on. DD

AndyMaz

Hiya!

Been a while. Hope you all had a wonderful Christmas (for those that celebrate it) and a great New year

Thought I'd pop back and give you all an update. So after the Rheumy had referred me for Physio the hospital gave me a call 2 weeks ago and booked me in to see the Physio. The Rheumy had indicated his clinical diagnosis of AS, so they Physio assessment was based on that.

The Physio asked me all about the pain and stiffness etc. Said I displayed classic symptoms, but, as pointed out in my notes, the MRI hadn't shown anything untoward yet. She went on to explain that it can take a while, years, to show up.

Her recommendation was Hydrotherpary and keep on with the diclofenac. So last Friday I had my first Hydrotherapy session, which went well. But boy did I ache the next day!!

Every Friday I'll be having 20 minute sessions of light exercise to begin with, building up to longer more intense sessions.

dreamdaisy

Hello, it's good to hear from you again. I have memories of hydrotherapy, it's so lovely when you're in the warm water the tendency is to over-do things and yup, stuff hurts after! You have a plan in place and that is a good thing, I hope it proves to be of benefit; please let us know how you get on with it, yes? I wish you well. DD

AndyMaz

It was nice on Friday because it was so cold outside. Didn't want to get out of the water brrrrr

stickywicket

That sounds good, Andy. Whenever I've been on the rheumatology ward, hydro was always the coveted treatment. I foyu can just get those glued-up joints moving a bit under water you should be able to keep it up then on 'dry land'. I hope so.

LignumVitae

Ahhh Andy, I was only thinking today I hadn't seen you on here, glad you are still around. Hydro- wow, it got me moving again a couple of years back. You start off aching after it and in the end you don't but boy do you feel the results...in a good way. I did wonders for my mobility and stability, hope it does for you. My finest moment came just as I was discharged when I beat the rather strapping young male physio in a balancing match involving those noodle things whilst throwing a ball...fun and health benefits. Good luck, LV

AndyMaz

I had to have two noodles to help me float.

Need to loose a bit of weight, me thinks

dreamdaisy

Who doesn't? Being in the pool and moving around even just a little will help you to burn of a couple more calories than you otherwise would - resist the temptation to reward yourself with a cup of hot chocolate or a biccy and nibble a carrot instead. Not the same, I know, but . . . . DD

AndyMaz

Thanks guys

When I loosen up a bit I intend to do plenty of walking. I tried running and that nearly killed me. My back was agony.

I can only really walk a quarter of a mile before it starts to hurt at the moment. So when I'm reaping the rewards of Hydro I'll treat myself to a half mile walk. Luckily I don't live far from rolling fields and stunning countryside!

dreamdaisy

Running? Nuh-uh, so not a good idea. The walking is much better, far less impact on the joints and make sure you don sturdy, supportive footwear. And maybe take a stick? That can help ease a deal of strain on the hurty stuff. DD