Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need help please

Hello All,
I am having major problems with my AS. The pain is about to do me in.
I am on Oxycotin 20 mg twice a day, Oxycontin 10 mg once a day and hyrocodone
for break through pain. It is not coming even close to stopping the pain.
My back is fused,(one bone) from my waist down. It is in my every joint in my body.
I can't do the diet thing because of other problems. I have very bad neuropathy,
diabetes, hypothyroidism, hypertension, irritable bowel syndrome, diverticulitis, and of course AS. I am soon to be 48 and ready to give up on life. My body
hurts so bad. I was on MS Contin for over a year. But it got to where I was on a high does and it wasn't even working. I am a mess. I am on a lot of meds. I also take Enbrel. Do you have any suggestions?
Thanks
Rebecca

Hi Rebecca

Sorry you are going through so much but hang in there. I know it may sound crazy right now but there will be better days soon.

John

Hi Rebecca!
Don't give up hope on the "biologics" like Enbrel,yet- there is also Remicade and Humira and there will be new versions and treatments in the future..

Enbrel has really worked, although you must have the doc monitor your blood...and report any side effects...the big thing is giving yourself a shot...and any rashes you develop at the site you stick the needle in...I'm still a bit queasy but the results are worth the slight prick...just keep up your knowledge of side effects, you can do it online, and the Enliven services can be helpful (Ebrel's nurses)...

With biologics, there is no pain, as they stop the underlying inflamation, and I have not popped an Advil for pain in like two years...(ok, perhaps for a hangover)...hang in there, and stop the synthetic morphine, that will stop pain, get you high, but not stop the underlying disease like the biologics on the market now...let me know if this makes sense or how you are doing...

Peace, you rock_
Lincster

Hi, Rebecca:

Quote:

---

I can't do the diet thing because of other problems.

---

Fasting is a great option for AS.

Diet is the cause of both IBS and diverticulitis, and a primary cause of type II diabetes. I got rid of the diverticulitis after a prolonged fast and no IBS at all during the process. A short fast eliminates my own hypertension.

Dr. Garten's fasting chapter also claims that it helps relieve diabetes; you (and anyone else) are welcome to it, if interested. Garten was convinced it was a panacea, and often said that if fasting were a pill it would be the most widely prescribed one here in the US.

I hope that you begin feeling better soon,
John

Hi Rebecca, I'm so sorry to hear you feel so very awful.

I'm nowhere near close to being an expert on these things, but it may be time to look at trying Remicade or Humira instead of the Enbrel. It depends, tho, on how long you've been on Enbrel. Regardless, the meds you are on do not help and you need to try a new mix.

John has a very good suggestion in trying a fast. The three day apple fast might be worth it. Alot of people here have had really good results after it and once you've done it, you may have a better idea of where the pain actually is.

Also, see if you can get referred to a pain clinic. They will help you learn alternative methods of dealing with your pain, as well as help you find meds that will ease things for you.

Honey, if I could take your pain away, I would. At 48 you are far too young to be experiencing this. However, there must be something that the doctors haven't tried. Please don't give up, OK? Keep hope in your heart (even if it's hidden away) and if you don't feel able to do that, I'll hope for you.

Many hugs,

Hi Rebecca,

It's so hard to find comfort,it is such a lonely feeling as pain seems to lock out the world around us.I have spent many days on the verge of tears,not a pretty picture for a 40 year old man eh?
I believe that it is important to remember that no one has the right answer for you but if you take what others say and try to apply this to your experiece you will know which bits fit and which bits don't.
For my bit I would say the most important thing you have to have is your mind in shape to deal with the pain. A few years back while going through a really bad flare I found this doctor running a pain clinic,he told me he could do nothing for my condition but could help with the pain. My rhumy was not impressed and did not want me to get the steroid injections,well I was depressed and said to hell with him and got the pain relief. It was for my shoulder and neck,I know you have pain all over but I believe if you can get some relief for the worst parts it makes it easier to cope with the rest. The best bit of advise I got from this doctor was sleep. He told me that if your not sleeping your body will not be able to cope and heal. I find that if I do not get sleep because of pain the depression is worse as the mind is not up to the task.This doctor gave me Zimovane which is a relaxant, he told me it was not a sleeping tablet and would not be addictive. This was about 7 years ago and I have to say he was right,the zimovane helped me to sleep and things were much more manageable.I still have the zimovane but now only use it about once a month,its like a service,I need a good nights sleep and I'm up to the task for another while.
I have just started on enbrel myself,just today in fact.I have been at my end lately and I have pinned a lot of hope on this,I know I can't beat the diease but I can't let it beat me.If I am going to do this I must keep my mind strong,I believe we all have the answers to what's best for ourselves and I hope you find yours,listen to others but only use the bits which fit.

Best of luck,
Bert.

Hi rebecca,

I can't really make any suggestions, I just wanted to let you know that we are all here for you - don't give up. Better days will come, take care of yourself and let people know when your feeling bad, your not alone.

Louisa

I'm not sure what idea to offer. I just want to say that at times when my pain had been at its worst (also fully fused and deteriorating spine) it seemed a change would help.

I would build up toreances to med's and so thaey wouldn't work. Change even if its to a "weaker" med might work.

The diet ideas can't hurt. I know when I limit my food intake I do better. For whatever reason anything more than moderate meals starch included or not affect me adversely.

THings such as accupuncture and massage and even at one time a hmeopath offered various moments of relief in times when I was quite sure there was no way a particular cycle of severe pain would end. Getting into a pool is always beneficial. ( l laugh when I post that becuase to my own detriment its been over 2 years since I've done any regular pool exercise) My life is too busy to do what I know is wise and helpful.

Just believe and try changing things. Something always works, maybe not as much as we need or like, but enough to help each of us endure that's why so manyof us are here helping each other and pulling for each other.

Best wishes ot you.