My Life with Ankylosing Spondylitis and Fibromyalgia

By mattie

Last Updated:

1 min read

I have both AS and Fibro. It sucks!

So much pain, no life, and I'm in bed most of the time.

I can't stand very long, don't walk straight, scared of stairs and I had to give up driving.

Let @mattie know they are not alone and leave a comment below!

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PattiB Member

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1. Nicky-Flikas-aks Member
 
 Hi Patti I am hear with you and I know there is more on here that feel the same. I know having fibro and AS together is not a fun combo. How are you feeling today? Hugs, Nicky (Team Member)
BeckyShambley Member

I am only 48, have been diagnosed with AS and then was diagnosed with Ehlers Danlos. Now it seems I may suffer from sjogren's syndrome as well. My poor doctor, she's amazing and I am one of the few people I know that has reasonable passion meds, in my opinion, and I still struggle to even leave the house. I also have COPD, and so a pneumonia not has left me on oxygen as well. You ever wonder if your gene pool should be called a gene swamp instead? I know that is how I describe mine. I spend much of my day in bed, listening to audio books and painting. If you want suggestions for audiobooks, let me know. I listen mostly to fantasy and non fiction, but I've read a LOT of books as I've suffered from asthma since birth. Yeah, like I said, it's a gene swamp. I used to be a polymer clay artist but have had to take up painting to save my hands. It's just enough to keep me slightly sane. 🤪
CommunityMember305fcf Member

I have AS, PPMS, Fibro, COPD,(stage 4), have had back surgery, had surgery on both arms, anxiety , depression, my neck is collapsed, and recently I am now having heart problems. I have no support group, and cannot go to most medical facilities because I am unable to breath with their policy mask. I can use a face shield, but they will not allow that. Now my question is where do I find help? I don't have any help and even though I manage to live with all my ( which no one seems to notices), I am getting worse. ☹
1. BeckyShambley Member
 
 <inline-mention username="CommunityMember305fcf" user-id="6220862"/> as someone with COPD, I CAN RELATE! I got hospitalized last Nov for what they think was Covid pneumonia. I've been on supplemental oxygen ever since. I got all excited when I found an herbal supplement to help me quit smoking but then, even though it was working, I may have had an allergic reaction. I was so mad. It even helped with my anxiety and sleeping so when it didn't become something I could continue, I was ready to cry. Now I've resolved to try to figure out which item I was allergic to and try each of them alone. Figure it's not going to do me in any faster than my body is already trying for! Lol So I assume your doctor for COPD is someone you talk to often, if you can, ask them about it. It allows me to use the masks. I hope that helps. Sending you hugs as I know exactly how hard multiple health issues can be. I hope everyone doesn't mind me poking my head in here. I just found this site. I can't stand some of the Facebook groups so I figured I'd check this place out😉
2. Nicky-Flikas-aks Member
 
 Hi Becky Welcome to the community and I hope you find it helpful as I have. We are here for any support your need. Hugs !!! Nicky (Team Member)
CommunityMemberea4be4 Member

I also have both now that I’ve turned 65 I understand that Medicare won’t pay for some meds My pain has been thru the roof Rheumatologist just put me on Humira I took my second shot and still in severe pain when I called her she told me it takes 12 weeks for the medicine to get in my body so what am I to do in the meantime take tramadol it’s so frustrating are used to be a Remicade patient for years and years and years see 2345 and six are so bad that I constantly have neck pain and shoulder pain I had to get epidurals for that can anyone please tell me what medicines you think work best or what could help me especially at age 65 I was diagnosed in 2007 was misdiagnosed for at least 15 years prior to that
PattiB Member

Patti B, I was diagnosed with AS (non-rad) last year and thought finally I have a name for all this pain and fatigue. I'm 70 years old and have been going to a pain clinic since 2004. I was told I had a bad case of fibromyalgia. The pain would get so severe in my shoulders, hips, back, sacrum and sometimes my ankle bones would slip out of place. In the city I used to live, an orthopedic surgeon recommended a pain clinic because I had cervical and lumbar spondylosis and some other problems in 2004. Then the attacks would come with overwhelming pain and fatigue, and I could hardly move. I explained all this to my pain doctor in 2012, when you get older you become sort of invisible, and he listened sent me a MRI last month, of just my hips nothing of my thoracic or cervical or shoulders. I went back to get the results he said it was just my fibro. I used to be an athlete from the time I was 4 years old so I've exercised my whole life and that has always helped me. It is getting harder but I try to stay positive. I read if you have non-rad AS that AS may not show up for 10-20years and it's been much longer than that for me. My rheumatologist won't see me anymore because I can't take biologics. I have histoplasmosis also and I lost sight in one eye from that and still have histo spots in the other eye and my retinologist doesn't think biologics would be good in my situation. I more question: I was told I have a neurological balance disorder, does anyone else have a bad balance problem? r 
1. CommunityMemberea4be4 Member
 
 I was told recently by a new doctor I saw that auto immune patients should not have taken the Covid vaccine because I have had a lot more problems since Covid has occurred and not getting any help from any other doctors until I saw this one. Has anyone else heard this? He is running several blood test including a long Covid blood test.
2. Nicky Flikas Member
 
 <inline-mention username="CommunityMemberea4be4" user-id="8097825"/> This is the first I hear this. I am sorry you are struggling. I hope this doctor you are seeing will be able to help you. Please give us an update and I would also love to see if anyone has experienced the same. I know many that after the shot they haven't been feeling well and some are still struggling. Warm hugs, Nicky (Team Member)
Nicky-Flikas-aks Member

Hi Mattie, I am hear to tell you you are not alone and I know what you are feeling having fibromyalgia and AS can be a lot. I myself been diagnosed with both at the same time. It has been very very hard. But taking one day at a time and making small steps and goals have helped me keep looking at a positive side of things. Before and after diagnosis, I spent a lot of days in bed. Most days where is bed often. You are not alone. This is ok and nothing wrong with it. I have learned to listen to my body and what it needs. On the days I know i need to rest, I let myself do it. I have slowly pushed myself every so on a little more where I can do more things a little bit more than usual. Give yourself time. Are you seeing a doctor that maybe can find some treatment? I have been on a lot, but have found tramacet has been helping with my pain on some days and now on biologics. I still have days and sometimes weeks where i am not well and flaring, but I have been getting better days. I wish you to find the same. You are not alone. There is hope. It's just to find your right things that will help. Sending you hugs and strength!!! Nicky (Community Member)
Painpaingoaway Member

Fibro, Ankloyd spondylitis, bursitis in hips, right knee replaced, osteoarthritis in left knee, Gastro Paresis, C 3,4,5 in neck compressing need surgery, also back surgery needed. I pray for us all, only 58 yrs old, can hardly walk and pain is excruciating from head to toes. I am seeing a Reumatolologist to r/o Psoriatic Arthritis. Stay as comfortable as you can. I use lidocaine patches for muscle spasms and the do help. 🙏🙏🙏🙏🙏🙏🙏
RroseappleHopes Member

hi, <inline-mention username="mattie" user-id="2379213"/> I'm still putting together all of the parts of this AS thing. I've been making sooo many accommodations over the years without even knowing one thing could have anything to do with any of the others. I've lived alone for many years, now. When I first feel nausea coming on I make the effort to prepare a bucket/waste basket with several garbage bags. even if I use outdoor trash bags, if I toss the cookies, I can tie a knot in the top to create a new space with no, or limited, odor so I don't have to get up to change it. Some tips I've found that help nausea include: Cold Air Conditioning! A spritzer bottle filled with water, periodically sprayed on my face. Sometimes you'll find them with a battery operated fan attached. Peppermint tea, sweeter than I typically enjoy Crystalized ginger or ginger ale, keep a couple of cans near your bed to sip on even if its not cold, or... if you have it in you, set up a small cooler for the soda Aromatics, I use Lavender; Menthol; Eucalyptus; Camphor. I dab some oils on a tissue and keep it close to my nose. Ice, behind the neck and on the forehead a sleep mask, lights and shadows make me worse Sit up straight when you can, even with eyes closed, to help release gas One last suggestion, BUT CHECK WITH YOUR PROVIDER FOR POSSIBLE DRUG INTERACTIONS: OTC Motion sickness medications like Dramamine 
1. Doreen H Community Admin
 
 <inline-mention username="RroseappleHopes" user-id="4698549"/> Thanks for chiming in and adding these great tips! It sounds like you've had more than your fair share of nausea. Sending you all my best, Doreen (Team Member)
JudyGrace Member

Hi Mattie. In a weird way, I am happy that I am not the only one with fibro and AS. I was diagnosed with fibro in 2000 and with AS 2021. My AS diagnosis was misdiagnosed for many years. Some days are better than others and I cannot recall a day without pain of some sort. My rheumatologist treats the fibro with Lyrica and my AS with Simponi. My body did not react well to Humira. On the really bad days I remind myself that this too shall pass and on the good days, I try to intentionally enjoy them. I hope that you have more good days than bad and know that I am rooting for you.
Nadine Cruz Member

<inline-mention username="mattie" user-id="2379213"/> Hey Mattie Hope you're doing well today! This stood out for me because i also have AS and Fibro my AS diagnosis was first and a few months later i developed Fibro and battling both is def a challenge that i was not ready for, have you found anything to be helpful since this post? I hope that you are coping well and have found some ways to manage because i know how difficult it can be to manage both conditions. All my best Nadine (Team Member)
kris-as-fl Member

Hi Mattie! I just found the site. I too have pretty severe AS. On a god day I can walkabout a block with the help of a cane, I cannot drive anymore (though I still own a car out of some ridiculous hope 😂), and I also need to lie down most of the day. My AS started when I turned 33, I’m now 40. My rheumatologist holds out hope I’ll walk better and have drastically less pain, so we keep trying biologics/anti-TNF drugs. I’m on #5 and have had a little help with pain in my hands and feet, but nothing has helped my back and leg pain (sciatica 24/7). Have you tried the biologics yet? I’ve met a few people who it completely put them in remission and they are back to their old lives. Hope you can find something that helps.
1. Lawrence Rick Phillips Member
 
 It is good to have you with us kris-as-fl !! I am sorry you are having difficulty finding the correct biologic medication. I am also on my 5th biologic medication and I can say when they fail it is difficult. However when they work it is amazing. I hope you find one that works well for you !! rick - moderator
Cassia Pelton Member

Hi Mattie, Thank you for sharing this. The AS community is here for you! It is hard to accept a life of pain and have to give things up. Have you found anything that has brought you relief or joy? Wishing you the best!