Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; cortisone terror

I have been following the nsd and other healing regimens religiously for the past year and a half. They have really, really helped me (I went from thinking disability was on my horizon to functioning almost back to my normal- which has been a bit slow and achy all my life- and even better than that on many days). Nevertheless, about twice a week I have had a spot on the outside (inside?) of my scapula (towards the backbone)that would give me nauseating pain. I would ride it out and it would only last for about a day on each occurrence.

I was SO CLOSE to feeling like a normal human being that in a moment of weakness (and fear, as I have to start taking a graduate school class in the fall, along with my full time job) I accepted a cortizone shot in the place of my pain. It got immediately a lot worse, which I assumed was a normal "cortisone flare", but it has been almost a week and a half now and my shoulder pain has gone from my normal tiny pea sized center of pain (I could never figure out how such a small area could effect my entire body so much)that responded well to stretching to a horrible shoulder-wide pinching ache that feels like it needs to be stabilized from moving. It feels like a sports injury instead of simple, annoying inflammation. It started to feel better four days in, but then it plateaued. Two days ago I gave it a good stretch (which made it MUCH WORSE) and then I had the area gently massaged yesterday (which has made the pain unbearable)

I was wondering, has anyone else had this type of experience? If so what did you do? How long did it last?

I am also wondering what kind of doctor should I visit? What should I ask for?

Please, please help me. I have not felt this kind of desperation in a very, very long time.

Stacey

If I had a flare of any kind the first thing I would do is water fast for as long as possible. I might have to go to bed to do this and watch a good movie. But anyway, my last water fast lasted 3 days but even after 1 day I can sometimes feel better

Anyway, if I am not entirely well and I really cannot water fast any more I then eat only protien and fat foods 20% protein and 80% fat, plus a few supplements that I will tell you more about if you email me

Once feeling fine I might then start adding safe carbs but keep these as low as possible (usually below 15g for as long as possible) to a macimum of 30g for me, but I do know others that can go to about 60g without their symptoms returning

As you know we cannot eat starch and I cannot eat lactose either, but right now I am off all carbohydrate and eating only natural foods like meat fish poultry and eggs plus plenty of fat and supplements

I am i my third week of this and feel fine, no ot fine great, and I do not want to return to eating carbs because whilst I am ot eating carbs i stay in ketosis and whilst in Ketosis I get no symptoms and no pain

When i return to carbs I will do my best to ensure all of the carbs I eat are safe carbs and that I do not over do it with them

Starch, lactose, fructose and sugar have all caused me several health problems over the years and I have used hypnosis to stop myself wanting them and the ketosis ensures I do not want them

I know what i am advocating is not the standard way of doing things, but I cannot go day to day workig out if this treatment is harming me, or if this food is harming me I need to feel well to be happy

Stacey if you want to know more about the vitamis I take etc send me a PM. This no carb thing is not permanent. It can be done for just a few days whilst the flare clears or for a long time to avoid them and other symptoms too. It is up to you but it is a useful tool to have that you can turn to when ever things do go wrong for you

Love Joanne

Stacey, I'm so sorry this has happened.
First of all, please try not to worry.
Stop exercising and stretching, in my opinion, if you can. I mean, if you have to exercise because otherwise you will hurt worse elsewhere, I get that. Gentle walks? Walking slowly in a pool? But if you can treat this as a kind of injury, I think your body is telling you to just let it heal by being still.
Do try and make time every day as often as you can to go into a deep, deep relaxed state, like a yoga nidra. Whatever gets you to that place of utter surrender, make time for that. I believe it is crucial for healing. At other times, send your body from head to toe the message that this pain does not mean an emergency, and that all is well and all will be well. Feel the endorphins your body produces gathering energy and mobilizing forces to heal.
Eat your nourishing foods and trust the power of this to heal as well. Try and indulge yourself with some shortcuts so you are not standing in a hot kitchen.
Listen to your favorite music that lifts your heart, watch only the silliest or inspiring movies. Don't research online, just get support and get off and get happy.
I've had flare ups of localized pain that made me feel so awful, so this is based on my experience, so please don't think I'm being too much of a bossy sister! The main thing to have I believe is faith that you can ride this out, since pain makes you feel like you are in danger. You've got to override that cognitively and with your behavior. And give yourself a lot of love and understanding: if you are so angry and afraid that is completely to be expected, and this too shall pass.
xoxoxox

Thanks so much for the support. Unfortunately, I do not think that the pain I am feeling is directly AS related. I feel that the shot has wreaked havoc with my muscles or tendons or ligaments or something and my body is slow to heal because of the AS. I dropped something extremely heavy on my foot last summer and it still has some residual pain! I have very much "fine tuned" my diet and supplements, but this pain seems unresponsive to my old tricks.

Yes, I need to relax. I just feel broken. If I can manage, I am going to try to go to my Jeffy's art opening tonight, which will be a love-filled endorphined gala. I may even break out the nsaids, something I am VERY against taking under normal circumstances.

....and that israeli movie I watched last night was probably not a good idea.....

much love,
Stacey

dont know what kind of doc to go to but at least go to your GP for starters. im sorry you hurt like this and hope it improves quickly. hang in there.

Stacey, I know what you mean about feeling as though it is not AS related directly, but the AS makes healing more involved. I think I am the same way.

see my answer to you in the other thread where you posted! yes, i know this pain! it is a nightmare! going through it again right now! but have learned a lot in the last 12 years of dealing with it! see answers there and more later! last fall was the worst, shut my intestines down so i wasn't digesting my food for a month, triggered muscle spasms up into my neck and head and that all weakened, so far i've got it better under control this time, but only by not sitting, only sleeping on ice packs (a gel one that is soft (colpac) with a cvs "peas" one that stays cold for about 6 hours under it) or if you can lay on the opposite side to sleep (i can't due to my SI, partly why its such a nightmare for me), lots of ice, take nsaids if you can, i can't so i have a nsaid flector patch over it 24/7 changing it every 12 hours, and am doing a short course of pred, but no idea what i'll do once the pred is up on sunday. walking seems to help mine tremendously, though when its really bad, no arm swinging, hand in pocket instead. i told my husband if i could just walk for a week, no sitting, no laying, i could heal it up! but our world was not made for that, especially when we have to go to work. yes, i am a bit desperate too right now, but read my other post to you!

Stacey - cortisone shots into the shoulder are a NO-NO. Nowt you can do about it now, but, please, never let em do this to you again. Cortisone into the shoulder burns out the ligaments and tendons into the shoulders and should NEVER be done unless and under ultrasound - and even then...NO. Even by the MOST experienced orthopaedic surgeon let alone a rheumy - makes me mad. Anyway, you have had it done.

REST. ICE. Wait it out. Nothing else that you can do now. But, Never, EVER have such a shot into yr shoulder again. Hyaluaronic acids, OK. NOT cortisone. Cortisone burns out ligaments anpd tendons into the shoulders - especially INTO the *shoulders. Shoulders are the most mobile part of the WHOLE body -

Have only just yesterday posted on this very point, NO cortisone injections into the shoulders, pleeeeese.

Will fe-find the article and repost here. NOT the fault of yr rheumy, he don't know any better - him, and along with 99.5% of ALL other rheumies.

Here ya go cortisone/shoulders:-

http://www.shoulderdoc.co.uk/article.asp?section=56

and here's the biggie:-

http://www.shoulderdoc.co.uk/article.asp?article=82&section=56

Most Drs let alone rheumies are even aware of the damage that those cortisone injections can do, and do do, into the shoulders. In the end it is the patient that suffers - the Dr 75% couldn't care less!

More:-

Shoulder Injections
L Funk, 2003 The shoulder has been traditionally known as the unanswered joint, wi...
15/11/2006
Read more...

Hyaluronan - Basic Science
L Funk, 2003 Hyaluronan is the general term designating the linear repeating disaccharid...
22/08/2004
Read more...

Literature Review
Shoulder Injections - The Evidence L Funk, 2005 The shoulder has been traditi...
22/08/2004
Read more...

Interesting that this has been under discussion since 'afore' 2005 and yet, the rheumies still 'insist' on *cortisone... They are NOT upto speed, but, it is the orthopaedic surgeon who has to deal with the bungling rheumies, who put the kybosh on the ligaments and tendons of the poor patient - culperable ignorance.

NOT acceptable - the evidence has been out there long enough.