My Experience With SAPHO Syndrome, Rib Neuropathy and Staph Infection

lifey.org/health My Experience With SAPHO Syndrome, Rib Neuropathy and Staph Infection.

[@axil424]

I have SAPHO Syndrome too, and would love to speak with the lady in this video personally if possible.

[@justahumanbeing5735]

They tried many biological on me with MTX. They would work for a while, and then I would develop a reaction. Now I am on Simponi Aria IV without MTX and I am doing better than I ever have. I spent 30+ years trying to tell doctors that I felt awful. They told me to exercise more and try to lose a little weight. By the age of 40, I couldn't work anymore. By the age of 45, I couldn't take care of my basic needs like washing dressing and food prep. Finally I was diagnosed at age 46 with fibro and SAPHO. Learning to interpret my pain and know which pain is which is complicated. I feel pain all over: ribs, heels, joints, headaches etc. I have learned at this point that any strain on my body, even just going to a doctor or a store, will cause bone swelling the next day(s). I also get cramps and spasms in muscle (often ribs). This isn't even the whole story! It is too complicated for a comment. It is a long road, but get a rheumatologist to help manage your meds and a physiatrist to help manage the pain not addressed by the biologics.

[@polishchick71989]

I have just been diagnosed with SAPHO and endometriosis. I have started the WHM three weeks ago and it has helped me manage pain and inflammation more than any of the meds they have given me - and has helped manage the side effects. I am looking for others afflicted for support but its difficult as it is a "rare disorder." I would like to get in touch with the woman in this video and everyone in the comments!

[@irfanm5892]

Which bone is affected for you ?

[@abishek3255]

For me just now diagnosed, i ve only SAP syptoms they ve give me steroids and dmards😭

[@cbdsavedmyfamily1019]

I too have SAPHO syndrome with HS. I would love to speak to the lady in this video. Can anyone help with that?

[@robinfoote3185]

I have SAPHO with HS too, and it's tough. I would like to talk to her too, so she knows she's not alone. The dr wants me to research methotrexate, I think he wants me to take it. Now, I'm scared....

[@edwinjason9279]

I'm diagnosed with SAPHO SYNDROME too..God saved my life😀...still under treatment

[@barefootbythecreek4859]

I’m experiencing similar issues but with pain in my feet can you help me get in contact with her? I think my feet my have a staph infection without giving to many details on here.

[@marianogaracia3402]

Teno 15 años

[@marianogaracia3402]

No entiendo ingles 😭🤦‍♂️

[@sylviekennyiliano]

Helloww i have also SAPHO😢

[@hanbhnassah9342]

I have for 15 years sapho nothing hard then this

[@helmutschroeder1269]

Hi again, I just listened to your other video and wrote a comment. I live as part of my chronic disease with polyneuropathy. I have no diabetes. I find it interesting, that you don’t mention in both of your videos once the possibility that your health issues could be diet related. Have you been tested for a Leaky Gut? I control my polyneuropathy with a specific diet. This diet is keeping me actually healthier than most people around me. Although, it takes a lot of discipline. Our health is our own responsibility, don’t rely on doctors alone!