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How should I feel? #282418
01/15/19 08:30 PM
01/15/19 08:30 PM
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kjb Offline OP
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OK, so I ll give a little run down.
I have Ankylosing Spondylitis and Fibromyalgia
Currently on Remicade and MTX
Have taken Enbril, Humeria, Cosentyx

I still have pain, maybe not as persistent or severe as before treatments, but its still there. I still don't sleep through the night, I still wake up stiff, it may not last as long as before treatment, but stiff all the same. I am beginning to wonder if I am thinking wrong.
Maybe I will always have pain to some degree? I think I expected all the pain to be gone if a treatment was working. Can someone tell me am i expecting too much?

I recently switched Rhuemys, my old one never seemed to answer my questions, except with maybe another question. I am hoping the new one will be easier to talk with, because truly I am confused.

Re: How should I feel? [Re: kjb] #282419
01/15/19 10:37 PM
01/15/19 10:37 PM
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SouthernMoss Online
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Everyone is different in how well they respond to treatment. Some have no pain at all, and others continue to have quite a bit of pain, especially if they have damage that occurred pre-diagnosis. Most of us are somewhere in between.

I am still stiff in the mornings, but not to the point where I can't lean forward to brush my teeth or get ready for work. I still have pain at times, especially if I do too much or push too hard. I can't hold my granddaughter in my right arm due to elbow and wrist issues. I still get enthesitis in the back of my knees.There's a couple of moves I can't do at water aerobics because they make my SI joints flare. But if I look at myself before diagnosis and now, the difference is huge.

You have two diagnoses, which complicates things even more. Are you able to distinguish between your AS pain and fibromyalgia pain? Are you taking anything for your fibromyalgia? Unless I'm mistaken, Remicade and MTX do not help fibromyalgia.

I hope you are able to establish a good relationship with your new rheumy. It's important to be able to talk to your rheumy and feel like you are being heard.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: How should I feel? [Re: kjb] #282420
01/16/19 12:08 PM
01/16/19 12:08 PM
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Hello, kjb:

Many years ago, I was able to find out how I "should" feel--by fasting.
So I did.
If 4-5 days could take down most flares, I figured more days could really tell me how I should feel!
I fasted 20 days and after that was able to ski, play racquetball, and run without pain.
Regret my dietary ignorance then, for I got back my AS, eventually.
"If fasting were a pill, it would be the most-prescribed in the world" Dr. Max O. Garten 1901-1996

HELTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: How should I feel? [Re: SouthernMoss] #282421
01/16/19 02:43 PM
01/16/19 02:43 PM
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kjb Offline OP
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Thank you both for responding. I feel a little better knowing that I shouldn't necessarily be pain or stiffness free.
Originally Posted by SouthernMoss

I hope you are able to establish a good relationship with your new rheumy. It's important to be able to talk to your rheumy and feel like you are being heard.

I agree! Which is why I changed Rheumys. I am hoping that I can have good relationship with her. She seems to be on her game as far as followup with me. I had blood work done Monday before my infusion and by Wednesday morning I knew my liver enzymes are elevated so she is changing my dosage on MTX and folic acid. Then back in a few weeks to do blood-work again so she can monitor before my next infusion. My last Rheumy was not so quick to respond and always seemed to jump right to worse case scenario. It made it hard to relax at all and begin to understand what was actually happening to me.

Re: How should I feel? [Re: kjb] #282422
01/16/19 04:19 PM
01/16/19 04:19 PM
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With Remicade, they can increase the dose so tell your doctor. My stiffness in morning is very mild and only lasts a short time. I no longer have pain in the middle of the night. Getting a good nights sleep is very important. My pain is only from damaged joints. frown I wish I had had treatment earlier in the disease. But I know what is damaged and how to limit additional pain. Like for my poor ankles, no standing for a long time etc. My pain does increase when the weather is bad and a couple of days before my next treatment.

I too went through a lot of the meds BUT they all worked fabulously until they turned to water. frown Drs say it is because I went so many years without treatment. I will always need more than one medication but am now considered in remission.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: How should I feel? [Re: kjb] #282467
01/19/19 09:54 PM
01/19/19 09:54 PM
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I will just share that despite all the meds such as Enbrel, mtx, indomethacin, and others.. I have always needed pain medication as well. Enbrel and mtx suppress a lot of pain, but it has never been enough for me.

Re: How should I feel? [Re: kjb] #282593
02/08/19 02:30 PM
02/08/19 02:30 PM
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kjb Offline OP
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Thank you all for your replies. I am sorry it took me a bit to come back on here. I have been going through something. Just don't know what yet. I am in constant pain and my hands are so puffy I look like I have sausages for fingers. I went Monday for an appointment with my Rheumy and she took a ton of blood-work, I am hoping to find out today what is going on. She did mention that some of the tests she probably wouldn't get answers to until today.
In the meantime on the 13th, 2 days after my last infusion, I had elevated liver enzymes, so they lowered my MTX dosage and upped my Folic acid. I can't take any Tylenol, not that that helps me anyway, but after Monday she put me on Prednisone, and now all I can take is aspirin for the pain, and it doesn't touch it. I don't do well with Prednisone as far as I get way emotional, and I hate the way it makes me feel, my hands are still all puffy and I am starting to get depressed. Mostly because the pain and I think the Prednisone making me feel off. I also feel sometimes like I can't catch a break, I just want to feel good for a day or two. Is that really too much to ask.

I don't want to ask for painkillers, I always feel like I am giving into to this if I do, but I am so tired. Maybe it would be alright to ask for something to help me at least? until they figure out what to do for me. Does anyone have any suggestions as to a mild painkiller? I do have a friend that has autoimmune diseases and told me to ask for Tramadol, will that make me loopy, I don't like that feeling either.

Re: How should I feel? [Re: kjb] #282594
02/08/19 03:55 PM
02/08/19 03:55 PM
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If you can get painkillers go for it. That is the one thing I wish they would give me. Next time my doctor prescribes a chiropractor or support group for my pain I am going to punch him in the throat.

Re: How should I feel? [Re: kjb] #282632
02/12/19 10:44 PM
02/12/19 10:44 PM
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achala Offline
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I recently started to play chess. And was able to even draw against my father in law. Beat my wife 100:0 and had a go at computer level 3 out of 10.
Imagine where our knowledge lays in the matter of trade off between drugs and the side effects in the light this unfortunate condition.
Sometimes I wonder how long how much we are really focusing on solving this matter and competition just creates a lag trying to reinvent the wheel. And in fact still we have no clue... imagine how many years it is going to take.

Last edited by achala; 02/12/19 10:56 PM.

diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilterally DES,PVD
Eosinophilic Gastritis
Signs of inflammations/erosions on MRI`s for axial and Achilles/calcaneus + bursitis
Sulfasalazine 3g 08.2018-05.2019
currently COX2 inhibitor 90mg
Supplements: vit A/C/D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
swimming/yoga
Re: How should I feel? [Re: kjb] #282649
02/16/19 09:31 AM
02/16/19 09:31 AM
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NSW, Australia
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I always hurt. The Enbrel just lessens the pain.
Like you, I thought I'd have the miracle cure...
So disappointed that it wasn't.

I'm currently suffering from facial shingles, so my pain is on another level.

Hope your new Rheumy has some answers for you.


Ankylosing Spondylitis, HLA B27-, Total Thyroidectomy, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Zantec, Panadol Osteo, Krill Oil, Vit D.

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