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Joined: Feb 2012
Posts: 126
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Feb 2012
Posts: 126 |
Thanks Big Crunch!...I so appreciate speaking to someone who has gone thru what I am going thru!...You are so right, it is a really tough time..trying to not get depressed...Seems like two steps forward, one step back!..sometimes....I feel like a bit of a mess too right now...and you can only talk to friends about this beast so much...Not for them to not get tired of hearing about it....
I so glad you spoke to a nurse, that's what I did first too...Enbrel has a line you can call and talk to a nurse...very helpful. I hope it goes away again for you now that you have stopped the injections....I was also on Methotrexate...so I will continue to take it and I can take Celebrex as well if I go into a total flare...experiencing quite a bit of low back pain...feels like my spine is on tender hooks...movement hurts and woke stiff again at 4 am...Not a good sign...I was one of those people who really benefit from Enbrel...so this stinks....I see the Rheumi again in Sept....short of crisis...impossible to see her.
thanks for the encouragement about the Paleo...The only thing I haven't done is remove all dairy...I still eat plain yogurt and hard cheese...might need to dump all dairy?
thanks also for the reminder not to ignore the pain...I think many AS'ers do that?...We live with so much of it..it even gets old to us....For me, it's hard cause I have quite a bit of OA in my lower spine and damage to the SI joints...so some of it isn,t inflammatory...requires sifting and sorting.
Take care, hope the Rheumi has answers for you...Don,t minimize the symptoms and that they have come and gone with coming off the drug.:)
Laurel
Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)
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Joined: Feb 2012
Posts: 126
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Feb 2012
Posts: 126 |
Wilhelm, I would still mention this to your Rheumi...THis happens to me too at night...neuropathy is usually worse at night...It happens when I am sleeping and wakes me up...I have always slept the same way and it has only started happening in the last month... I have tingling during the day too...It's almost like a vibrating or like bumble bees on you...Check out Enbrel side affects...Enbrel.com...is good...I am not trying to scare you...just read about it and then monitor what if any symptoms you have...I think we just have to be careful to not ignore things.
Take care.
Laurel
Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)
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Joined: Oct 2012
Posts: 190
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: Oct 2012
Posts: 190 |
It happends pretty rarely, and never at night, and it's always when I'm positionned in a way that might block normal circulation. It never happens "by itself" when I'm just standing or sitting normally.
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Joined: May 2013
Posts: 37
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OP
Member
Joined: May 2013
Posts: 37 |
Thanks Big Crunch!...I so appreciate speaking to someone who has gone thru what I am going thru!...You are so right, it is a really tough time..trying to not get depressed...Seems like two steps forward, one step back!..sometimes....I feel like a bit of a mess too right now...and you can only talk to friends about this beast so much...Not for them to not get tired of hearing about it....
I so glad you spoke to a nurse, that's what I did first too...Enbrel has a line you can call and talk to a nurse...very helpful. I hope it goes away again for you now that you have stopped the injections....I was also on Methotrexate...so I will continue to take it and I can take Celebrex as well if I go into a total flare...experiencing quite a bit of low back pain...feels like my spine is on tender hooks...movement hurts and woke stiff again at 4 am...Not a good sign...I was one of those people who really benefit from Enbrel...so this stinks....I see the Rheumi again in Sept....short of crisis...impossible to see her.
thanks for the encouragement about the Paleo...The only thing I haven't done is remove all dairy...I still eat plain yogurt and hard cheese...might need to dump all dairy?
thanks also for the reminder not to ignore the pain...I think many AS'ers do that?...We live with so much of it..it even gets old to us....For me, it's hard cause I have quite a bit of OA in my lower spine and damage to the SI joints...so some of it isn,t inflammatory...requires sifting and sorting.
Take care, hope the Rheumi has answers for you...Don,t minimize the symptoms and that they have come and gone with coming off the drug.:)
Laurel
Ahh I am sorry to hear you are in so much pain as well, stay strong and keep going after your health, in the end that is the most important thing and it can dictate the majority of the things we do in this life. Have you gone for an allergy test? If not I recommend getting in touch with a naturopath and getting one done, it will give you some closure on what foods might be causing the most irritation and inflammation for you. For me I tested allergic to dairy, beef, chocolate and some green beans, I mean its not to the point where I have to stab an epi-pen when I take these foods, but it can definitely make a big difference in your health. Good luck!
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Joined: Feb 2012
Posts: 126
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Feb 2012
Posts: 126 |
Thanks...stinks, eh....Glad for this site otherwise I would get pretty isolated sometimes:)
Good thinking about the testing...I have had allergy testing done twice 3 years apart and came up with the same thing...no allergy just sensitivity...all grains, suffixes, preservatives, soy, vinegars, beer, yeast....I avoid them all.
during my apple cleanse my tummy felt great, my back felt on the verge of a flair?...Then now it's over and I am eating clean...But I question the dairy I had yesterday...cottage cheese....might have starch in it?...Looking in that as possible source..
thanks, and good luck to you too:)
Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)
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Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
My right SI joint fused without me ever experiencing pain in my tailbone. I don't understand how that happened. The left is not all the way fused yet and it is letting me know today more than ever that it is still trying to do so.
I recently switched off of Enbrel to Simponi and it seems some of the symptoms are returning, but I've only had one dose of Simponi. Well, hang in there.
David
Diagnosed AS August of 2012
Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013
Currently taking Cimzia, Naproxen, and the occasional Tramadol
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Joined: Feb 2012
Posts: 126
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Feb 2012
Posts: 126 |
Good luck David. My right SI is fused but I still get grief from it...And my left is the real problem...and is letting me know all about tonite too:(...
My Rheumi says no more TNF's.
L
Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)
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Joined: May 2013
Posts: 37
Member
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OP
Member
Joined: May 2013
Posts: 37 |
Good luck David. My right SI is fused but I still get grief from it...And my left is the real problem...and is letting me know all about tonite too:(...
My Rheumi says no more TNF's.
L Why no more TNF's? Because of the negative side effects you've been having? I just talked to my rheumy today and he decided I hold off on the Humira until my next appointment with him in June so we can decide on a new treatment for me. He suggested we try Enbrel, but I am scared that it's going to have the same sharp needle pains in my hands just like Humira did. Any thoughts? What are some less intensive treatments that I could do other than TNF's? I've tried Celebrex recently as a trial and it helped me get through the day, but I didn't take it long enough for it to put me into remission. Today has definitely been one of the more exhausting days due to the pain, I pretty much locked myself in my room and was on my computer... arrghhh!
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Joined: Sep 2001
Posts: 6,164 Likes: 13
AS Czar
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AS Czar
Joined: Sep 2001
Posts: 6,164 Likes: 13 |
WELCOME, BigCrunch: My question to you guys is what steps should I take to get my health back and reduce inflammation so I can go about my happy and active lifestyle and not be such a lazy downer all the time? 1) Analyze the difference between Your Paleo diet and Carol Sinclair's NSD--then follow the latter to the letter! If You want, You can get on the NSD/diet Forum and ask the experts for specifics--give exact record of foods. 2) Use some iodine to TEST YOUR SUPPLEMENTS! "Soya isolate" is absolute murder on AS. 3) Fast for five days, water only. 4) If You desire a less-strict diet, consider contacting the Road Back Foundation for their doctor listing in Your area and have the physician work up a suitable antibiotic protocol to use in conjunction with NSD. My own "AP for AS" (Protocol2) is available in the link "Important AS Resources" below, in my signature. 5) Don't look back! HEALTH, John
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Joined: May 2013
Posts: 37
Member
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OP
Member
Joined: May 2013
Posts: 37 |
WELCOME, BigCrunch: My question to you guys is what steps should I take to get my health back and reduce inflammation so I can go about my happy and active lifestyle and not be such a lazy downer all the time? 1) Analyze the difference between Your Paleo diet and Carol Sinclair's NSD--then follow the latter to the letter! If You want, You can get on the NSD/diet Forum and ask the experts for specifics--give exact record of foods. 2) Use some iodine to TEST YOUR SUPPLEMENTS! "Soya isolate" is absolute murder on AS. 3) Fast for five days, water only. 4) If You desire a less-strict diet, consider contacting the Road Back Foundation for their doctor listing in Your area and have the physician work up a suitable antibiotic protocol to use in conjunction with NSD. My own "AP for AS" (Protocol2) is available in the link "Important AS Resources" below, in my signature. 5) Don't look back! HEALTH, John Great List! Thank you for that I will definitely take those all into consideration.
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