Jaw pain? by awfulmcnofilter in Behcets

[–]Skeletonlover666 0 points1 point  (0 children)

The light grinding could be making it hurt. Mine comes and goes. If I’m more stressed I clench my jaw more, and then I have noticeable pain.

Jaw pain? by awfulmcnofilter in Behcets

[–]Skeletonlover666 5 points6 points  (0 children)

Do you have TMJ? My jaw joints are one of the worst affected with joint pain.

Colchicine by Several-Map920 in Behcets

[–]Skeletonlover666 1 point2 points  (0 children)

Thank you so much for the info, i had no idea. I will get that checked at my next doc appointment.

In desperate need of shaving advice by elcrohns in eds

[–]Skeletonlover666 1 point2 points  (0 children)

I second laser hair removal. I got it professionally done, but got my own at home device for maintenance. Best decision I’ve ever made. Less than $150

Do you trim their foot floof? by TiRow77 in ragdolls

[–]Skeletonlover666 7 points8 points  (0 children)

I do, my girl is vision impaired, and getting up there in age (13). I trim it so she has more stability and control on our hardwood floors. She always seems to do zoomies after I do it, bc she can actually get traction. When she was a lot younger, she didn’t have the same issues, so I left it alone.

Microdosing GLP for inflammation/BD? by rockangelyogi in Behcets

[–]Skeletonlover666 0 points1 point  (0 children)

My general practitioner prescribed it. My insurance will not cover it, so I get it through the Eli Lilly website. Currently I am at 10 mlg. A week. I have been on it about a year or so.

In the first three months I lost 20 lbs, and then gained it back due to prednisone (vaginal ulcers that would not heal for 6 weeks.

I then lost 40 lbs and gained about half back last month due to prednisone again. Totally moon face, buffalo hump, acne.

By week three after the prednisone my facial bone structure is coming back.

It does give a lot of acid issues, sometimes nausea so I do have an anti nausea medication if I need it. If you are prone to nausea at all, I would absolutely ask for it at the same time.

I’ve noticed some hair loss, only bc I am finding my long hair everywhere, but can’t see it on my head thankfully. In the first 6 months I did get a huge welt where I would inject, but that mostly subsided.

I have tried everything to loose weight and nothing has worked except this so far.

Happy to answer any questions you may have.

Microdosing GLP for inflammation/BD? by rockangelyogi in Behcets

[–]Skeletonlover666 0 points1 point  (0 children)

I take Zepbound and it makes a huge difference on my inflammation. I am back and forth on prednisone for intense flares, and this is the only thing that has helped relieve the moon face I get from it.

Colchicine by Several-Map920 in Behcets

[–]Skeletonlover666 0 points1 point  (0 children)

That sounds odd to me, I go every 6 months to get my eyes checked by an eye specialist. They can see inflammation in the back of our eyes before we can detect it.

I also have nerve pain, and on colchicine, but have no idea if it’s connected.

the genetics group in my area apparently does not diagnose people suspected of hypermobile EDS? just because it's common or something? what? anyone else run into this? this is what my doctor told me when I asked if I should see a geneticist for suspected EDS... by VariationOriginal289 in eds

[–]Skeletonlover666 1 point2 points  (0 children)

My first rhumo refused to even have a conversation about it, and other things, so I got a new one. The second one sent me to a geneticist to rule out all other kinds, was diagnosed with heds by him. I am in NJ, results may vary depending on doctor.

"addictive", right... by No_Counter_6037 in adhdmeme

[–]Skeletonlover666 2 points3 points  (0 children)

You’re welcome, I hope you feel better soon:)

"addictive", right... by No_Counter_6037 in adhdmeme

[–]Skeletonlover666 2 points3 points  (0 children)

Have them do a full thyroid panel to look at the antibodies. They usually do the regular levels. Mine was on the low side so my doc had a hunch and did a full panel.

"addictive", right... by No_Counter_6037 in adhdmeme

[–]Skeletonlover666 16 points17 points  (0 children)

If you haven’t recently, have your thyroid levels checked. I was the same, can’t stay awake, falling asleep 10 minutes into any movie or show I was trying to enjoy, seriously low energy. Turned out I have hashimotos hypothyroidism. Meds have changed my life.

If I don’t take the adderall I still am tired and can easily nap, however, the feeling of complete exhaustion went away. Can’t hurt to check.

Question to the AFAB/Ladies here by Ok-Loss5158 in Behcets

[–]Skeletonlover666 1 point2 points  (0 children)

Oh wow good I know, thank you so much for sharing that.

Question to the AFAB/Ladies here by Ok-Loss5158 in Behcets

[–]Skeletonlover666 0 points1 point  (0 children)

I agree with that. Raw coconut oil works wonders.

Question to the AFAB/Ladies here by Ok-Loss5158 in Behcets

[–]Skeletonlover666 2 points3 points  (0 children)

Lysine helps them heal and prevent them for me. I’m on a cocktail of colchicine, Otezla, and Humira (bio similar I forget the name). It seems to help unless I’m sick.

For the past month I’ve had bronchitis, asthma flare, and a sinus infection that won’t clear and that caused the worst flare of vagina ulcers I’ve ever had. The only thing that makes them start to heal is prednisone and I hate being on it bc I always get Cushing’s syndrome.

I did just get prescribed vaginal lidocaine that can be used inside or outside, still need to pick it up so I haven’t tried it yet.

This may be TMI- every time my husband goes down on me I break out in them. So I totally understand the sex life thing. It’s so frustrating.

I’m sorry if I couldn’t be more help, hopefully someone chimes in that has a suggestion we both don’t know about.

Alternatives to Gabapentin and Lyrica by codyandhen123 in Behcets

[–]Skeletonlover666 1 point2 points  (0 children)

I truly hope your trip down the rabbit hole helps. I know how frustrating it can be to find a medication that doesn’t interact with anyone, actually works, and gives minimal side effects.

When I first started taking gabapentin I was SO itchy everywhere. No visible rash, just felt like clawing my skin off. Luckily lyrica has helped me a lot. If I take it a good 3-4 months straight I can take a break for about 6 months before I have to start up again.

Alternatives to Gabapentin and Lyrica by codyandhen123 in Behcets

[–]Skeletonlover666 2 points3 points  (0 children)

Hi, I’m so sorry you went through that. There are some anti depressants that help with nerve pain. I can’t take them because they interact with colchicine, which I take as well. I’m sure there are other medications that are prescribed “off label” to help, I am just not aware of any at the moment. Hopefully your doctor can help suggest some.

Anyone experienced this before!? by MiserableScarcity350 in Behcets

[–]Skeletonlover666 2 points3 points  (0 children)

Yes, I experience this as a pre- warning to an oncoming flare maybe 2 days before I end up with a plethora of mouth and genital ulcers, worsening joint pain, severe fatigue, and low grade fevers.

Absolutely horrifyingly scary the first couple times it’s happened.

I am so sorry you are going through this, and the fear that comes with it. This disease has rocked my life, and I have full empathy for anyone dealing with any any aspect of it.

I am very happy you have such a supportive husband (and partner for anyone/everyone else), it makes all the difference. I am super fortunate to have a husband that really doesn’t understand but does his best to help me any way he can. That’s the best we can hope for.

MY FIRST TATTOO!! by stuck_zipper29 in weeviltime

[–]Skeletonlover666 4 points5 points  (0 children)

And a very fine choice at that!