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Hi, New member here, a bit of advice please? #282153
11/28/18 02:13 PM
11/28/18 02:13 PM
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Mystel Offline OP
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Mystel  Offline OP
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Hi everyone ! I am so glad I found this forum. Life has been getting increasingly more difficult for me with my symptoms. I moved to a different state, and unfortunately couldnt keep my health insurence, so I havent been to a RA since Aug, and my symptoms just keep getting worse. I can finally go in January when my new insurence starts and get back on track.


I was diagnosed in the spondyloarthropathies family in Feb of this year, but I think it is turning into AS. I am 28, diagnosed when I was 27 !

I have shoulder pain, feels like my shoulders are always strained
elbow pain
wrist pain,
finger pain/ sausage fingers
hip pain,
leg pain/ leg weakness feels like my legs will give out from under me
knee pain/ swollen knees (have had knee problems since I was 13, RA said this could have been a sign of early Spondy)
ankle pain, super swollen constantly
Achilles pain, and bursitis on both sides.
toes hurt sometimes.
Also lower back pain, and sometimes upper back pain.
Sciatica pain on right side
extreme fatigue/ dizziness (but combined with depression/ anxiety extreme fatigue isn't new to me)
pain sleeping / waking up multiple times a night. Can't remember when I slept through a whole night.
and new are eye floaties

If anyone has any advice on how to relieve pain even tho im on a steriod and sulfasalzine till I can try methotrexate again, please let me know! I had to go get a steriod shot at urgent care the other day because I couldnt lift my arms above my head.

I just feel very deteated right now because my body is working against me.

Re: Hi, New member here, a bit of advice please? [Re: Mystel] #282154
11/28/18 02:28 PM
11/28/18 02:28 PM
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MartinMMM Offline
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Sounds like you have the full suite of symptoms. I have some of the same issues, plus IBS, and only got relief from humira, plus a few other therapies. Biologics are the way to go. I also take Nortriptyline which helps the IBS and also provides pain control. I also use a stimulation device called quell https://www.quellrelief.com/testimo...laX33gIV1P_jBx2-iAwnEAAYASAAEgLfuvD_BwE. It's available on amazon and it definitely helps me - they claim 80% of people get relief from it. A few others on this site use it. Also for some of the localized pain like shoulders I use voltaren cream. Compression gloves at night help the hands tremendously.

Hope this helps! My symptoms wax and wane and right now I 'm doing well. I hope your intense flare ends soon!

Re: Hi, New member here, a bit of advice please? [Re: Mystel] #282155
11/28/18 03:14 PM
11/28/18 03:14 PM
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SouthernMoss Online
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Hopefully you have already scheduled an appointment with your rheumy for January. If not, you need to do that ASAP, since rheumatologists are normally booked up way in advance. In the meantime, you might call his/her office, explain your situation, and ask for a prescription for an NSAID to help get you by until your visit.

if the rheumy isn't comfortable doing that, you could try over the counter NSAIDs like ibuprofen (Advil) or naproxen (Aleve). These work best when taken on a daily basis so that you have a consistent amount in your system at all times. As with any medication they are not without risks, so be advised that this is not something you would want to do long-term without doctor supervision.

Hot baths or showers can be helpful, especially at night before bed and first thing in the morning. Some people even get up in the middle of the night to take a shower or bath when they are painful.

Physical activity is important. It can be hard to get up and move when we are hurting, but we need to keep moving to protect our joints and preserve our range of motion. And exercise causes our bodies to release endorphins, which reduce our perception of pain and trigger positive feelings. If you haven't been staying active, start with just 5 minutes of gentle stretching and go from there. You don't want to do too much too soon, especially when you are in a flare.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
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: Hi, New member here, a bit of advice please? [Re: Mystel] #282156
11/28/18 05:06 PM
11/28/18 05:06 PM
Joined: Jul 2006
Posts: 6,610
New York
Banana Online
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Banana  Online
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I agree with Southern Moss, don't wait till the insurance kicks in but make the appointment with a dr that takes your new insurance. It can take months for a new patient appointment to open up.

I hope you can take NSAIDs as regular as possible. Do you have any perscriptions you can refill from the last dr? A generic should be cheap. Take them on a full stomach esp if over the counter. I have been loving the Advil PM's lately when I get a flare, I sleep much better plus helps with pain.

Try to exercise, swimming will not hurt you and the heated pool will help.

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: Hi, New member here, a bit of advice please? [Re: Banana] #282157
11/28/18 05:56 PM
11/28/18 05:56 PM
Joined: Nov 2018
Posts: 4
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Mystel Offline OP
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Mystel  Offline OP
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Originally Posted by MartinMMM
Sounds like you have the full suite of symptoms. I have some of the same issues, plus IBS, and only got relief from humira, plus a few other therapies. Biologics are the way to go. I also take Nortriptyline which helps the IBS and also provides pain control. I also use a stimulation device called quell https://www.quellrelief.com/testimo...laX33gIV1P_jBx2-iAwnEAAYASAAEgLfuvD_BwE. It's available on amazon and it definitely helps me - they claim 80% of people get relief from it. A few others on this site use it. Also for some of the localized pain like shoulders I use voltaren cream. Compression gloves at night help the hands tremendously.

Hope this helps! My symptoms wax and wane and right now I 'm doing well. I hope your intense flare ends soon!


Hey thanks for the advice! I'll look into Quell and see if it is something that could help! I wear knee braces, and ankle braces, and have thought to get some hand/ wrist compression gloves. Looking into ankle compression socks too. I am glad to hear that a cream helps, as I was looking into one, but unsure where to even start. I was tested for IBS, and chrons, and a lot of gastro things, but thankfully I don't have any of those. So thats one thing I don't have to deal with right now. But again, thank you for the response!


Originally Posted by SouthernMoss
Hopefully you have already scheduled an appointment with your rheumy for January. If not, you need to do that ASAP, since rheumatologists are normally booked up way in advance. In the meantime, you might call his/her office, explain your situation, and ask for a prescription for an NSAID to help get you by until your visit.

if the rheumy isn't comfortable doing that, you could try over the counter NSAIDs like ibuprofen (Advil) or naproxen (Aleve). These work best when taken on a daily basis so that you have a consistent amount in your system at all times. As with any medication they are not without risks, so be advised that this is not something you would want to do long-term without doctor supervision.

Hot baths or showers can be helpful, especially at night before bed and first thing in the morning. Some people even get up in the middle of the night to take a shower or bath when they are painful.

Physical activity is important. It can be hard to get up and move when we are hurting, but we need to keep moving to protect our joints and preserve our range of motion. And exercise causes our bodies to release endorphins, which reduce our perception of pain and trigger positive feelings. If you haven't been staying active, start with just 5 minutes of gentle stretching and go from there. You don't want to do too much too soon, especially when you are in a flare.


Thank you! I have called and scheduled an appt, so I'll be able to get in sometime in Jan. I'll try a ibuprofen or advil regiment, because I don't notice anything when I would take them just a few times a day, but not everyday. I was on meloxicam, and prednisone to try and help with the inflammation as well. I will also try to exercise, its super Difficult when you're in pain, but I have a pool, and took up swimming every few days. Thank you !!


Originally Posted by Banana
I agree with Southern Moss, don't wait till the insurance kicks in but make the appointment with a dr that takes your new insurance. It can take months for a new patient appointment to open up.

I hope you can take NSAIDs as regular as possible. Do you have any perscriptions you can refill from the last dr? A generic should be cheap. Take them on a full stomach esp if over the counter. I have been loving the Advil PM's lately when I get a flare, I sleep much better plus helps with pain.

Try to exercise, swimming will not hurt you and the heated pool will help.

Anna



Thank you!

Unfortunately, I only have the Sulfasalzine, and some meloxicam left. They gave me a bit of a supply, but insurance wouldn't cover the methotrexate, so I am out of luck there. I will try a NSAID regularly, and I do have a pool, but it's not heated. Luckily FL is still in the 80's and I can snag a swim when it's not too cold. smile

I'll try the advil PM's. I suffer from insomnia, so Ive tried meds to help with that, but the insomnia isn't being helped with my pain and being unable to sleep.

This flare up has been the worst so far, and with my job, I am on my feet for 8 hrs a day, and constantly moving. Which doesn't help, and makes sense with the repetitive motions that my shoulders got to the point where I couldn't move my arms. smirk

thank you all for the advice !!! It is very appreciated.

Re: Hi, New member here, a bit of advice please? [Re: Mystel] #282158
11/28/18 10:19 PM
11/28/18 10:19 PM
Joined: Jun 2012
Posts: 560
Los Angeles, CA
RAHMBA Offline
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RAHMBA  Offline
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Joined: Jun 2012
Posts: 560
Los Angeles, CA
Hi Mystel,

I can relate to a lot of what you mentioned. Sorry to hear what you're going through.

I agree with what the others have said. NSAIDS, hot showers, stretching all help with pain. It may seem impossible at times, but exercising is so helpful in the short term and long term for me.

Some diet things may help/hurt with your inflammation. there is a recent article in spondylitis plus magazine on this.

some resources for more information:
There is a good seminar from Dr. Overbaugh on pain:
https://www.spondylitis.org/Seminar...is-educational-seminar-from-dallas-texas .

Plus some good/short ThisASLifeLive videos that you may find helpful. Dawn & Dan have one on ‘painsominia’:
https://www.spondylitis.org/This-AS-Life-Live/pager/52522/page/2

As far as disease medications, note that if you do have a spondyloarthritis such as AS, then it’s my understanding that sulfasalazine and methotrexate are not effective treatments.

Treatment Guidelines are available here:
https://www.rheumatology.org/About-Us/Newsroom/Press-Releases/ArticleType/ArticleView/ArticleID/679

my understanding... Indicated treatments based on published papers in peeer reviewed medical journals for axSpA are NSAIDS, TNF inhibitors and IL17 inhibitors. There are related reasons for other meds, but they won’t treat the aspect of the disease that affect the low back, upper back, chest, neck, si joint, hip, etc.

Overview of medications: https://www.spondylitis.org/Medications

Several Seminars on management, including medical management, on this page including
Dr. Khan (he has AS),
Dr. Caplan (nice ‘mini med school description of why certain meds work),
Dr. Revielle (latest research and explains why ssz and mtx are not for AS),
Dr. Weisman, and
Dr. Hallegua.

https://www.spondylitis.org/Seminars-and-Webinars

Hope that helps, i realize this might be TMI. sorry, I tend to nerd out on this :-)


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Hi, New member here, a bit of advice please? [Re: RAHMBA] #282160
11/29/18 01:01 AM
11/29/18 01:01 AM
Joined: Nov 2018
Posts: 4
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Mystel Offline OP
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Mystel  Offline OP
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Joined: Nov 2018
Posts: 4
Originally Posted by RAHMBA
Hi Mystel,

I can relate to a lot of what you mentioned. Sorry to hear what you're going through.

I agree with what the others have said. NSAIDS, hot showers, stretching all help with pain. It may seem impossible at times, but exercising is so helpful in the short term and long term for me.

Some diet things may help/hurt with your inflammation. there is a recent article in spondylitis plus magazine on this.

some resources for more information:
There is a good seminar from Dr. Overbaugh on pain:
https://www.spondylitis.org/Seminar...is-educational-seminar-from-dallas-texas .

Plus some good/short ThisASLifeLive videos that you may find helpful. Dawn & Dan have one on ‘painsominia’:
https://www.spondylitis.org/This-AS-Life-Live/pager/52522/page/2

As far as disease medications, note that if you do have a spondyloarthritis such as AS, then it’s my understanding that sulfasalazine and methotrexate are not effective treatments.

Treatment Guidelines are available here:
https://www.rheumatology.org/About-Us/Newsroom/Press-Releases/ArticleType/ArticleView/ArticleID/679

my understanding... Indicated treatments based on published papers in peeer reviewed medical journals for axSpA are NSAIDS, TNF inhibitors and IL17 inhibitors. There are related reasons for other meds, but they won’t treat the aspect of the disease that affect the low back, upper back, chest, neck, si joint, hip, etc.

Overview of medications: https://www.spondylitis.org/Medications

Several Seminars on management, including medical management, on this page including
Dr. Khan (he has AS),
Dr. Caplan (nice ‘mini med school description of why certain meds work),
Dr. Revielle (latest research and explains why ssz and mtx are not for AS),
Dr. Weisman, and
Dr. Hallegua.

https://www.spondylitis.org/Seminars-and-Webinars

Hope that helps, i realize this might be TMI. sorry, I tend to nerd out on this :-)


No need to apologize! I have been trying to find actual decent information about all of this and you have pointed me in the right directions! Ill check everything out! I really appreciate it!

Since ive only been diagnosed offically since Feb, the Rhumy wanted to try out these meds first. As the inital diagnoses was in the Spondy family. With all of my symptoms, and reading what other symptoms are and a bit of researchI can almost guarentee it has turned into AS. Which Ive read that most cases of being in the spondy family turn out to be. So this fourm and all of this information is super helpful to me!

But I agree. I noticed a slight difference with the sulfasalzine. Now however, I havent noticed ot working as much. But since I wasnt on methotrexate for a while I never noticed anything with it. Im willing to try again, because that was what was told to me to try first because of insurence.


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