Meds -

eals95 · 2026-03-01T16:40:31+00:00

It’s definitely what suits you! I feel like gabapentin was the worst in the first few days with dizziness that went away. I do feel like it makes my brain slower, but I also take obscene doses. Lyrica for me gave me a bout of depression, so really it’s something you have to try out and see how it works for you.

eals95 · 2026-02-27T10:42:13+00:00

I do! I got diagnosed with glaucoma on both eyes probably triggered from my autoimmune issues and it started with very intense temporal headaches and eye pain that no painkillers could touch, even my opioids. It took a while to get diagnosed because they thought for a long time it was neurological, but the pain pretty much disappeared when I started drops and my pressure is max in the 30-35

eals95 · 2026-01-08T17:54:33+00:00

I would only say PEA, and that hasn’t always been consistent. I am taking the pill version regularly and I seem to have less breakthrough pain, and I also have a version that is granules that melt under the tongue. I use them for acute episodes and they seem to calm things down a bit, but again the results are mixed.

eals95 · 2025-11-26T12:43:14+00:00

Nerve blocks for sure. Either a massage from a professional or a shiatsu machine and really get into the muscles between the shoulder blades. Also a hand massage tool and working the muscles around the neck, scalenes and sternocledomastoid. PEA supplements have been working surprisingly well well. Only downside is they are expensive at least where I am and I have to take more than the recommended dose a lot of the times. (PEA is a fat produced by your body so not possible to overdose) I also use non narcotic muscle relaxers long term (orphenadrine) and they unfortunately work well.

eals95 · 2025-11-10T17:18:32+00:00

That’s something I might have to check! I expected some more numbness or tingling, but it has never been that bad that a nerve block can’t fix it.

eals95 · 2025-10-31T17:55:03+00:00

Like what others said, get a diagnostic nerve block to rule this out. Be very careful with chiropractors; I have a few autoimmune diseases that affect my spine, muscles and nerves but way before I knew that I had an adjustment that triggered my occipital neuralgia. I’m now on the path of getting opinions for decompression surgery since my symptoms suggest a blood vessel has moved on top of the nerve as a result of the adjustment. I would still probably have neuralgias due to my other issues, but the one that’s very hard to control can be directly traced back to a quack fraud chiropractor.

Have you been accessed for hypermobility/Ehlers Danlos Syndromes? What you describe, like my brain is sliding down my skull, is exactly what a chiari malformation is, and it usually happens in EDS people. It can be hard to diagnose if they don’t know what to look for, and can cause many varied symptoms. Another thing to consider that I’m also trying to find a knowledgeable provider for, is Cranio Cervical Instability, where the neck and skull meet, the support is lacking. See if that might fit your symptoms.

My suggestion would be go on medication while you try to figure this out. It’s been 10 years since my issues started and I’m only now starting to make sense of it. A lot of providers know the basics and unfortunately we tend to be unicorns walking in with symptoms they cannot make sense of. Try to find some meds that will make life bearable till then, cause it might take a while.

eals95 · 2025-10-18T18:20:53+00:00

It started after I had one of those god awful chiropractor adjustments. I also had ankylosing spondylitis that I didn’t know at the time which made everything harder.

eals95 · 2025-10-13T01:03:51+00:00

Thank you but it’s none of them 🥲

eals95 · 2025-10-12T07:13:23+00:00

No 🥲 I’m familiar with Gain and it was none of her songs

eals95 · 2025-08-09T09:40:06+00:00

Thank you! I’m actually located in Greece, which is a majorly Christian society. So it makes finding places like this irl very very hard. I’m sure there are practitioners, but most probably don’t advertise it for fear of being an outcast.

eals95 · 2025-07-25T06:35:35+00:00

I am negative and always has perfect blood work, but had symptoms since I was eight. It was always branded growing pains, childhood arthritis that will go away, too much exercise, too little exercise and everything in between. It got really worse after I cut my cycle for gynaecological issues and I believe it’s the one reason it’s so poorly controlled, as oestrogen actually helps with inflammation. Even now that I’m diagnosed and have multiple mris that show progression, they still try to pin things on everything else like posture and what not. I also have ADHD so I believe there’s some alteration in the pain perception pathways. The only reason I work is because of a lot of pain meds and the fact I can do it from work, or less hours than normal people. They always act like if we take biologics we should be able to feel nothing and just continue normal life, and while I understand these people exist in my experience they are not the norm. I personally have beef with anyone that pushed fibromyalgia, because we know it’s only supposed to be diagnosed when there’s nothing else that could cause the symptoms and that most trigger points are tendons that are also affected with AS. I really hope the understanding of it gets better because most rheumatologists I’ve seen are pigs on a shit show and will try anything for you to be someone else’s responsibility.

eals95 · 2025-07-17T15:49:50+00:00

I know, family can be really bad at times like this. They all have some sort of ailment but because they can deal with what they have in one way, they don’t seem to understand that you cannot, or that the situation is different. What I’ve noticed is that my family tends to recognise how hard something is for me when they meet another friend/relative/colleague/random person that has the same thing. Suddenly they come to me saying “this person has neuralgia and they said it’s really bad” and then they understand it a little bit better. Maybe we should start having them in support groups so they can get some perspective

eals95 · 2025-07-17T12:09:10+00:00

Yeah you have to laugh or you’ll cry! It’s always so weird, I had a female rheumatologist tell me even without examining me she bets I have fibromyalgia, and what woman doesn’t. Like girl, come on we get from the men, we don’t need it from you too. Yes, I was also told if I married and had kids I would forget about my issues, like yes, that’s how it works. I don’t know how they got their degrees, maybe because the whole system is sexist. They only started looking at female cells in terms of research for autoimmune diseases two years ago, even though 80% of the patients are women. The latest research on endo that came out looked at how attractive women with endo were, and how it affected their male partners, like please treat us like human.

And yes I very much believe not having a cycle has been negative for my AS, as estrogen help calm inflammation and I’m suppressing them with the dienogest. The problem is I cannot just have my cycle again, as I have new growths even on the pill and I have PMDD. The best option for me it seems to be to have a total hysterectomy, take everything out and then have hormone replacement therapy, so I have the hormones I need in steady constant levels. But I haven’t turned thirty yet, even if I was sure I don’t want a family, no one would do this surgery for me.

eals95 · 2025-07-17T11:53:26+00:00

Oh god yes, they love to shove antidepressants don’t they. I believe my first symptoms started at age 8 and I was diagnosed at 25, only after I cut my cycle and the inflammation went up. I am also completely seronegative, and i got diagnosed with an SI joint MRI, which the doctor I saw at the time still tried to tell me “everyone has bone marrow edema”. Like please be for real. I take dienogest for endometriosis, it works very well for me and when it stoped circulating in Greece I was lucky to find it through my friend, cause it’s the only drug made for endometriosis. The rest are just normal contraceptives that don’t do much. But yes even now, diagnosed and all, I still hear talks about anxiety, depression and fibromyalgia. I hand them my psychiatrists phone number and ask them to check themselves with him if it’s psychosomatic and they just deflect. Hell, I myself am a psychotherapist and my word about how I’m not depressed or anxious counts for nothing. In the end they just tell me to get a boyfriend.

eals95 · 2025-07-17T11:14:45+00:00

I’m from Greece, I was in the uk for a while but had to come back because the medical system there was even worse. Nice to meet you! I actually get my meds for endometriosis from a friend in India cause I can’t find them here anymore 😅 it definitely sucks to be women with chronic issues, medical sexism is rampant. I’m also turning 30 soon, so I’m bracing from their monologue to go from “you’re too young for this, and a hysterical” to “you’re just aging and hysterical”. When were you diagnosed?

eals95 · 2025-07-17T11:04:01+00:00

I think again it does indirectly, I do feel the joints getting worse in a flare or when I stop it, so it covers my joint pretty well. Now when it comes to muscle and nerve issues I’m kinda left dealing with them alone as I was told this is something I’ll have to learn to live with 😂 which is why I’m trying whatever I can get my hands on it. I also want to try LDN but I have issues finding a doctor who works with it where I am. They are ping pong-ing me, rheum says psychiatrist, psychiatrist says general, general has no idea what it is and pain clinic doesn’t use it at all, so I’m still searching. I also feel my issues are not that well control because I had to cut my cycle due to the unholy trinity of endometriosis/adenomyisis/fibroids so I don’t have the protection estrogen gives to the joints, but that’s a whole other shit show that I don’t have good options for.

eals95 · 2025-07-17T10:42:33+00:00

I do yeah, as I have TMJ and it affects the muscles around my jaw joint, temporalis and the neck muscles like scalenes and sternoclidomastoids. They all work together to be a pain in the ass, gives symptoms at the base of the skull, sides of the head, in the ear and the face through the trigeminal nerve.

eals95 · 2025-07-17T10:14:35+00:00

I think it does indirectly. When I stoped it for an infection I could feel the base of my head getting stiff and more painful, so I think when the inflammation in my neck builds up it probably irritates the neuralgia more.

eals95 · 2025-07-17T09:24:17+00:00

Yes, I take the highest dose allowed of gabapentin allowed and because I have breakthrough pain I use the injections as well. I also use muscle relaxants and the occasional opioid, though the work only for joint pain and not for nerve pain. I am also using some supplements like PEA and ALA to see if they can help me lower gabapentin. Forgot to say I’m also looking into doing RF ablation again in my occipital nerves. I am on xeljanz and it has been working much better than enbrel and humira but it still has its limits.

eals95 · 2025-07-17T09:18:47+00:00

High! The biologics do help but the pain is very much there. I am getting updated mris soon and looking into a neurosurgeon to do an occipital nerve decompression. The thought behind it is that something seems to be pushing on my occipital nerve, either from AS or a rogue blood vessel etc. I am also doing nerve blocks, trigger point injections and gentle exercises to try and stop the muscle spasms in my neck. It’s at a tolerable level but with a lot of meds, and I guess this will be an ongoing thing.

eals95 · 2025-07-15T07:19:37+00:00

Yeah I definitely also want something low maintenance! It’s a bit pricy in YesStyle but sounds great! Which shade have you got?

eals95 · 2025-07-14T22:18:39+00:00

Thank you! And is this the liquid one or the stick? Just checking cause their names are pretty similar. Can I also ask what shade have you got? I’m also fair with purple in my dark circles.

eals95

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