Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Broke down at the doctors today.

gene,
Thank you and God bless you also.
The changes program was about how the brain controls pain and that part was interesting however this is not the be all and end all.
Like I said in another reply, most of the benefit from those types are programs are seen in conditions where there is no mechanical reason for the pain. For example, on going pain after an injury that has healed/fixed. But just meditation, and changing the way your brain sees pain will only help so much when you have actual damaged joints and on going inflammation. For some reason though the pain clinic tend to treat ALL patients the same, that our pain is all in our head but as you know that is not the case with AS. After over 15yrs of being told it is all in your head to finally get a diagnoses and reason for feeling as bad as I do then to go back to being told it is all in my head again. Well yeah that doesn't sit to well with me.

Thank you again All the very best.

Thanks you.
It was a good day today. I got out to the beach to replant the dunes and while I am paying for it now I can smile because I know the pain I am in now is a reward for the good work I did today.

I have to say that the biggest thing I did learn from the "changes" program I was sent to was Empathy and compassion for those that are suffering neuropathic pain. I learnt that yes whilst this pain is caused from the brain and not from anything mechanically wrong, the pain is still REAL. And doesn't hurt any less just because there are no broken bones or inflammation. So whilst it didn't really help any with my own pain it did make me a better person.

All the best

Pezami
Yep have been there. I think most of us have.
I do have some "female issues" but they can't just assume if nothing shows up on their test that that is where the investigation ends and label you with the just making things up/ all in your head crap.
My sister nearly died because of this when she was 14, turned out her appendix had burst and the only thing that saved her life other than the doctor that finally picked up what was wrong, was that her body had formed a cyst around the appendix so when it burst the cyst contained all the bad stuff.
I just wish doctors would follow the old saying of If at first you don't succeed, try, try again. But sadly if you don't have the first thing they thought of they are stumped and it is the patient who must be wrong, not them.

Take care.

So sorry your pain clinic let you down. Try not to take it personal. I have found, my pain doctor does not understand the complexity of my disease so I mainly treat with my Rheumatologist, Immunologist and GP. My anxiety and depression is situational, only happens when my disease is not being managed properly. Who the heck wouldn't feel those emotions when your body is under extreme physical stress. Good doctors understand that it is just situational when the disease is out of control.

Hope you try Enbrel again soon. If it doesn't work out, you can try another biologic. Simponi has low allergy risk and I am doing much better on it because it has no preservatives. Keep us posted, we are here for you.

Shari

Shari
Thanks. I might try Simponi then. It was recently (last year or so) been put on the PBS here so it won't cost much so definitely worth a try.

Yes yes yes you so hit the nail on the head. The anxiety and depression is situational only. I am not anxious or depressed every day or even every week. Only when my pain is really bad especially when it affects my hands. And my anxiety is only when take medications or when those horrible stop smoking adds come on TV. I know I should stop smoking but it is hard (I am trying) but the adds don't make/help me stop they just make my so scared and anxious. But in general I am not an anxious person and I do not suffer anxiety away outside of these times.

As for the adjustment disorder well personally I think my reactions to the way my life has changed due to AS is no different to anyone here so if this makes us crazy well at least I am not alone I know I am part of a big family of crazy people here lol.
Take care.

Hugs, dear. I hope you can find a different pain clinic. There are others in your area, right? My pain doc told me (after a normal lumbar MRI that was just a couple of weeks after I had to miss 4 days of work for a huge flareup of symptoms) that they believed me when I said I hurt. Specifically, disks could be pain generators even when MRI signs were not severe. I suppose a good pain doc would be aware of this and that your doc might not be 'in the know.' Find a good one if you can. I hope you can. But don't lose faith in yourself. (((((aussiegirl))))))

Hi Trish,

we gals (and guys) have gotta stick together

I am still on LDN, along with the Humira. My rheumy allows me to do both. Thinking the LDN may keep my immune system "healthier" for being on a biologic. Also the vitamin C for that reason (orders from the rheumy).

Huggs

Sometimes I think it does good to break down in front of doctors - particularly either very caring ones (like your GP) or very uncaring ones - sometimes its the only way to really get through how bad things are.

I would be so angry too with the pain clinic for having basically been completely dishonest and pig ignorant with you. How on earth can a pain clinic hope to treat you if they don't have any idea of the impact of AS on your body? Maybe thats the first question for any new doctor, that is treating you for anything - "what do you know about AS?".

I know the whole psychological thing too - I don't believe its "mental illness" if its situational, its a normal reaction to an abnormal situation. If you can find the right psychologist (probably not someone who works with that pain clinic!) who really understands chronic illness, chronic pain and CBT, then you may be able to get some useful help. But, I totally agree that its not going to get rid of your pain. It might help you cope a bit better, it might drop your pain one notch on the pain scale which would make it manageable, but AS inflammation and damage just doesn't go away with mind control.

I understand your medication anxiety too - if your GP wants to help you try things again, then I am sure that together you can find a "safe" way to do it, where you know you have medical backup if things go wrong as well as the means to call that backup (which might include family and friends being aware of danger signs, and some kind of emergency speed dial on your phone).

Hang in there. Your GP sounds great. Let them lead on a plan for you, and I really hope things turn the corner for you soon.

So glad you were able to get out and do something nice too - even if it meant you had to accept the hurting afterwards.

((Aussiegirl)) I think of you often. I am glad you got to be out and do something that you enjoy.

I am glad you may try Simponi and hope it works great for you too. It is helping me so much, especially in my back. I went from having a hard time sleeping, driving, walking, sitting, standing and feeling stressed out and anxious most of the time to living life again, with a lot less stress . If you are scared of any reaction from it, just ask doc for back up steroids to have at home so you don't have to go in. I am very sensitive to medication and usually get major reactions from biologics but so far, so good on Simponi. I do take two Benadryl and two ES Tylenol about an hour before the injection. The once a month dosing is nice and it doesn't even hurt going in. I do feel more tired the day after the shot and do get sick more but it is a trade off.

In terms of your smoking, you can always try quitting once your disease is better managed, you have a lot on your plate right now. My sister has been smoking for years, is on Remicade, and never gets sick. She works full-time, in the public and has two school aged boys. I used to smoke but don't anymore.

Keep us posted and hope you have some better days real soon!

Shari