Fibromyalgia/Chronic Pain

Today I had a physical for the first time in…a very long time.
Though my doctor is reluctant to render an official diagnosis he said it’s very likely I have fibromyalgia and there’s a small chance I have lupus. (Will find out in 2 months)

Have any of you been diagnosed with either or both of these chronic illnesses? What helped you the most? Are you able to ride?

Any insight is very much appreciated, I’m a little bit freaked out.

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I have rheumatoid arthritis and fibromyalgia (plus some other odds and ends). RA and lupus share a lot of characteristics, and probably a common genetic source (my mother had lupus). My symptom onset was at age 38, and I’m 65 now.

I won’t sugarcoat it–this crap has definitely had a big impact on my life. I wasn’t riding when I was diagnosed. I became a rerider in my 40s, and it didn’t go well. I kept ending up in the ER with injuries due to my lack of balance.

I think if I’d continued riding all those in between years, I probably could have stuck with it. It also didn’t help that I was badly overhorsed. After giving up riding, I took up driving a couple of years later, and did very well with it. Nothing fancy, but I enjoyed the heck out of it.

In contrast, I’ve always been a cyclist and never gave it up. I’ve had to adjust my expectations, but I still ride my bike every day (a trike these days because of my balance problem). I really think it’s because I never stopped doing it that I’ve been able to continue.

I did keep working until I was 59, then my high stress, long hours job got to be too much and I retired early.

Everyone’s journey with these diseases is different. My mother had lupus for over 20 years when she tried figure skating (because I skated back then), and she became an ice dancer in spite of her limitations.

I have definitely deteriorated a lot and wouldn’t even consider driving a horse now, but I also have some other complications that exacerbate my pain and weakness.

This is a journey that is best done one step at a time. Don’t panic, and see what unfolds. If you questions, I am glad to answer them. There are others here who share similar conditions, and I’m sure some will chime in. Best of luck!

Rebecca

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I suffer Chronic Pain. I was told Fibromyalgia, but it isn’t really a diagnosis as much as a description of symptoms. I was told I have Scleroderma, but the lack of typical progression has me rethinking it and I am now having them look into multiple concussion syndrome instead and see a specialist soon.

What really helped me is going to a chronic pain clinic that did physio, occupational therapy, psychology etc to help with living with chronic pain. I did a pain program normally used for burn victims that really helped take the emotion away from pain.

I rode, but modified my riding. I also found wide tread stirrups and thicker reins helped, and I only ride horses with easy gaits that are ergonomic in build (I sold a really wide mare that was hurting my hips).

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Thank you for sharing and for your words of encouragement.
I haven’t ridden in about a year due to pain and chronic fatigue. I started cymbalta today and I’m hoping it can manage my symptoms so I have the ability to get back in the saddle.

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Thank you! I have a decent team in place in terms of psychiatrist/psychologist and my primary care doctor is amazing. I just started seeing him recently and he’s the first doctor who hasn’t attributed my pain and fatigue to depression (which I have very well controlled)

In 2020 I had spinal fusion surgery followed by multiple SI steroid injections. In 2021 I was diagnosed with endometriosis and my GYN ablated the tissue which was on my uterosacral ligament. I turn 32 this year.

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Best of luck with Cymbalta. I tried it a couple of years ago. It was great at first, but mostly stopped working much. I was having very vivid hallucinations on it, and as soon as my doctor found out he started weaning me off of it. Some people have a hard time weaning; I didn’t have much trouble. And I was glad when the hallucinations mostly stopped (I still occasionally have a night terror, which I had both before and after being on Cymbalta).

Each person’s experience with this drug can be so different. I hope you are one of the folks who do very well on it. I know people who do great on it.

Rebecca

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Cymbalta gave me suicidal imagery. Like i would be driving and suddenly by brain would be like: “hey, if you drove into that bridge pillar, it would kill you pretty quick”. Fortunately I wasn’t depressed and recognized that those were normal thoughts, and my pharmacist helped me to identify that medication as the cause. It was crazy!

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Wow, that’s a scary reaction.

@Omgitsme we don’t mention this scary stuff to make you worry. Just be aware that Cymbalta can be a problem for some people. For others, it’s a miracle drug.

One thing I also wanted to mention. If I’m remembering correctly, you are a much better rider than I ever was. So you may have a much easier time going back to riding. You haven’t been away from it for that long, and you are much more advanced than I am. So you may do great going back to it.

Jingling for you!

Rebecca

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Continuing the discussion from Fibromyalgia/Chronic Pain:

I have lupus and fibro. The first thing you need to do is find a really good rheumatologist who believes in fibro. Some dont and will tell you it’s all in your head.
The hardest think was getting used to being sore and tired and hurting all the time. I do still ride and have 4 horses at home. Up until about 3 years ago when my mare had to have surgery on her leg, I whipped in to a foxhunt for 20+ years.
Its the theory of relativity. An object in motion remains in motion. Either way you are going to feel like shit. So get up go ride go do your thing and then feel like shit.

I am on gabapentin and duloxetine, plus i take Tylenol by the handfuls. I also have type 1 diabetes. I did learn you can’t take Aleve with gabapentin, which sucks because i Love aleve.
I also take lots of epsom salt baths, and unfortunately i do rest alot and take naps You have to allocate your time and activities and ration your energy for the day… Its very easy to put yourself into a nasty flare and then youll be in your bed except to go to the bathroom for about a week . So you have to carefully triage your day.
But you can do it.

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Thank you all so much!

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also flourescent lighting is not your friend at all, and neither is sun. Cover yourself as much as you can, and try to avoid heat as much as possible

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This is so true! It was the same kind of logic when I worked for another 20 years after my diagnosis: either I could have a career that was very fulfilling and feel like shit, or I could stay home, become a slug and feel like shit. I always liked the distraction and fulfillment of doing the things that were important to me.

Rebecca

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Sorry in advance for the novel.
First of all, take a deep breath and don’t panic!

I was diagnosed with both lupus and fibromyalgia 5 days before my 40th birthday. (Happy Birthday! :roll_eyes:). I am now 68.

Before the diagnosis, I had about 6 months of feeling exhausted all the time. I was in the military, fit and a runner, so not being able to walk up a flight of stairs without pausing was really terrifying. I had muscle weakness and stiffness, pain in joints, odd rashes that came and went and muscle twitching in random parts of my body all night long, thus not getting any sleep.

I was put on hydroxychloroquine for the lupus and cyclobenzaprine (Flexeril) for the fibromyalgia symptoms. It took a couple of months to start feeling normal again.

During this time, I continued to mostly get on my mare. I would ride a little then take walking breaks as needed. One of the worst parts for riding, besides the exhaustion, was that my hands would cramp up after about 5 minutes. I would have to walk and massage my hands before I could hold the reins again.

There were definitely days, mostly during the first year after diagnosis and during warm weather, when I would need to have a trusted friend exercise my mare while I sat and watched. It was very frustrating. But within that first year, I went into remission and pretty much resumed all of my own riding and training, up to taking clinics with a couple of well-known dressage clinicians. Before I lost my mare at 13, I was schooling third, with bits of fourth. I had started her off the track myself, so I don’t feel that the lupus and fibromyalgia prevented me from bringing her along, it just took longer to accomplish.

Through the years, I have had the occasional flare-ups. These mostly occur in hot weather or when I consistently don’t get enough sleep or eat well. I am also very affected by environmental factors, such as fumes of any kind. (They had to re-tar the roof of a building where I worked, and I was really sick for about 10 days with the worst flare I ever had).

The sun is also a big enemy with lupus. Before I retired, I rode after work in the evening, Even on days off, I did not hit the barn until after 5 and always slathered on sunscreen.

I had my gelding for decades and rarely didn’t feel up to riding. If I had a flare, I would lunge him or walk on the trails. I was always prescribed prednisone for the flares but hated the side effects so much that I have refused to take it for years. If I feel a flare coming, which is pretty rare now, I just take it easy for 2-3 days and can pretty much bounce right back to normal activities.

There have been so many improvements in treatment over the years that the VAST majority of lupus patients can live a normal lifespan with the occasional inconvenience of flares.

Kind of funny story: Before I received the official diagnosis, I had started reading up on lupus (at the library, this was before the WWW). All the medical reference books were saying that lupus patients had a 50% chance of living 5 years. So I was thinking, well I can fit a lot of living into 5 years. I was also making plans and asked my best friend to take care of my horse and 2 cats.

The day I walked in and got the official diagnosis, the doctor said, well, you have lupus. And I said, very calmly, so I have a 50% chance of having 5 more years. He looked at me strangely and asked why I thought that. I told him about my research. He explained that the reference books had to have been out-dated, because with new medications and close tracking of the disease, that prognosis no longer existed.

You don’t have a diagnosis yet. Even if you get one, it is NOT the end of riding and living your best life. Irritating and inconvenient at times, but very doable.

Why are they saying that they need 2 months to give you a diagnosis? Have they done an anti-double stranded DNA test? I believe that’s still the gold standard for diagnosis and typing of lupus. Getting results for that shouldn’t take more than 2-3 days.

Since there is no one test that diagnoses fibro, they should be able to give that diagnosis once they’ve ruled out other things.

Sending you hugs and prayers in this very difficult time of waiting. If you have questions or just need to talk, please don’t hesitate to contact me here or via DM. :kissing_heart:
Pam

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This! My horses were always my priority (along with work to support them, of course). The first thing I gave up after my diagnosis was washing my car weekly. I just didn’t have the energy to do that and then go ride my horse.

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Ps cut out artificial sweeteners (Splendas, aspartame which is what is in Diet Coke, etc etc) they will really intensify your pain

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Thank you so much Pam

During my physical I mentioned A LOT of issues. My doctor has decided to tackle no more than two at a time, so I have a new migraine medication along with the Cymbalta. I’m scheduled for a follow up in 8 weeks to see if the new medications are working and then to tackle the next problems.
I assume he’s decided to wait the 8 weeks so that if I do have lupus I will have adjusted to the new medications and can start another.

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Just to say that acupuncture might be helpful. I started it post-chemo when I continued to have brain fog and fatigue for many months. Acupuncture helped. So now I have Long Covid, with a shopping list of symptoms, I am finding acupuncture is again helpful.

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Have you been tested for Lupus yet? I recalled one of the locally used horse show judges has Lupus. She got quite ill early in her diagnoses, and ended up with some organ damage, but that was over 20 years ago, and I saw her at a show recently and she looked great, albeit thin. I don’t think she is riding now, but she did ride for a while after diagnosis. If not tested yet, I would push for an actual diagnosis - she was much better able to deal with her issues once diagnosed.

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My doctor has put me on two new medications and said he would test for lupus at my follow up. The lab was closed for the day and since I was already scheduled for a follow up I guess he decided to do that instead of setting another appointment?

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Perhaps. Please make sure you do get tested! I hope the medications give you relief in the meantime though.

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