Newly diagnosed please read

Hi - 26 is young to have these issues. I spent a year mostly in bed before I was diagnosed because it hurt to walk or move in any other way. After diagnosis, I moved into a medication regimen combined with acupuncture that has really helped over time. I take Lyrica and low dose naltrexone in the mornings, and Lyrica again in the evenings. When I have a flare, I take Tonmya and soak in a tub with lavender epsom salts. Acupuncture is once a week. In addition, I live near a YMCA that has a hot tub and also water exercise classes in a warm water pool. When stretching is too painful to contemplate, the hot tub and gentle stretching in the warm water pool really help. I wish you well - I hope with the right meds you can find significant relief.

Wow. I don’t know where to begin. I’m so sorry for all your suffering. Angry, sad , grieving my old body and who I used to be. That’s me also. HOWEVER, I’ve come a long way and you can too. When my symptoms first started, it was bad. Went from Salsa dancing (hard, physically demanding long hours average 3 times per week in my early 50’s to barely being able to walk, had to crawl on all fours up stairs (lived in a townhouse with stairs to my bedroom), the action of opening a door was not possible from the pain, couldn’t step off a curb, shower hit me like needles, nerve pain along my legs that was excruciating. I refused any mobile aid. Doctors were thinking MS. You made me realize how much better I am! Tried so many things. Acupuncture, chiropractors, supplements, supplements, supplements vitamins, pain creams, heating pad, ibuprofen, hard meditations, yoga, much faith in God, and much more. When first diagnosed I was on Amitriptyline and it worked right away although much sedating it was a godsend. It caused me a heart problem (QT longation), found accidentally in EKG done for preop for minor surgery. It went away when i stopped it. Then took Cymbalta. Also took Gabapentin for many many years. They helped but my life was changed forever. My plan was to dance tango in my 90’s, that’s how good I felt before this hit me. Over one year ago I got off Cymbalta and Gabapentin due to side effects and have been doing much better with the help of LDN (low dose naltrexone, much info on here about it). You have to find a doctor that prescribes it and you have to get it from compounding pharmacy. I’m on 6 mg and better than ever pain wise, not perfect, not cured but some of my symptoms were side affects from Cymbalta and Gabapentin and not having the medication side affects has made me better too. So I feel I shouldn’t have taken those for so long. Fatigue, insomnia, IBS, brain fog other things still there. LDN, heating pad, biofreeze and ibuprofen only when needed, maybe 2-3 times per month, that’s it. The ibuprofen really helps! I would take it everyday it works so well however of course that’s not recommended and I’m doing well enough that I don’t need it everyday anyway. But my point being ibuprofen wouldn’t have helped at the beginning and now does. Although most likely what’s helping most is the LDN. So things can get better. Everyone is different in this illness. I’m 67 now and much better but always going to miss who I used to be. There’s so much more I can say but this is already long enough. This group has much much advise on methods that help make you better. If you go back on previous posts you will find suggestions on anything that is bothering you.
You can get better too. I pray for your better health. Peace and love.

I will be brief. DON'T give up. I fought 25 years with similar symptoms and was diagnosed with Fibromylagia in my 40s. Around the same time AFTER 25 years of deteriorating the blood bank (not the doctors!) discovered I had Hep C! The recovery was grueling. But I fought and was cured. About 10 years later it was the massive arthritis. Then the joint replacements began and I have major surgeries ever few years. (some could have killed me!). Yes, I am tired at 69 of a life filled with medical shit. But like you said YOU ARE BLESSED with a wonderful supportive partner. I am a widow alone with no close friends. I am an artist and have always found BLESSINGS in my total involvement in my art forms when I am capable. I have witnessed others who were impacted by negative health who overcame impossible odds to do their art form too. Grieve, yes, but don't think YOU KNOW what you are grieving about until YOU KNOW. You will find silver linings all around. Your grief may lead you to one, in fact! Love your partner, your community and life. Love is the answer. Give your life as much love as you can muster. On the bad days, do what you did - reach out for community. Did I say I was going to be brief?! sending you a hug. P.S. - came back to say: don't let a diagnosis define you!!! That alone is misery. Have a life inspite of a medical diagnosis. We are spirit beings too. Remember to focus on your spiritual needs when the physical fails you.

Wow. I don’t know where to begin. I’m so sorry for all your suffering. Angry, sad , grieving my old body and who I used to be. That’s me also. HOWEVER, I’ve come a long way and you can too. When my symptoms first started, it was bad. Went from Salsa dancing (hard, physically demanding long hours average 3 times per week in my early 50’s to barely being able to walk, had to crawl on all fours up stairs (lived in a townhouse with stairs to my bedroom), the action of opening a door was not possible from the pain, couldn’t step off a curb, shower hit me like needles, nerve pain along my legs that was excruciating. I refused any mobile aid. Doctors were thinking MS. You made me realize how much better I am! Tried so many things. Acupuncture, chiropractors, supplements, supplements, supplements vitamins, pain creams, heating pad, ibuprofen, hard meditations, yoga, much faith in God, and much more. When first diagnosed I was on Amitriptyline and it worked right away although much sedating it was a godsend. It caused me a heart problem (QT longation), found accidentally in EKG done for preop for minor surgery. It went away when i stopped it. Then took Cymbalta. Also took Gabapentin for many many years. They helped but my life was changed forever. My plan was to dance tango in my 90’s, that’s how good I felt before this hit me. Over one year ago I got off Cymbalta and Gabapentin due to side effects and have been doing much better with the help of LDN (low dose naltrexone, much info on here about it). You have to find a doctor that prescribes it and you have to get it from compounding pharmacy. I’m on 6 mg and better than ever pain wise, not perfect, not cured but some of my symptoms were side affects from Cymbalta and Gabapentin and not having the medication side affects has made me better too. So I feel I shouldn’t have taken those for so long. Fatigue, insomnia, IBS, brain fog other things still there. LDN, heating pad, biofreeze and ibuprofen only when needed, maybe 2-3 times per month, that’s it. The ibuprofen really helps! I would take it everyday it works so well however of course that’s not recommended and I’m doing well enough that I don’t need it everyday anyway. But my point being ibuprofen wouldn’t have helped at the beginning and now does. Although most likely what’s helping most is the LDN. So things can get better. Everyone is different in this illness. I’m 67 now and much better but always going to miss who I used to be. There’s so much more I can say but this is already long enough. This group has much much advise on methods that help make you better. If you go back on previous posts you will find suggestions on anything that is bothering you.
You can get better too. I pray for your better health. Peace and love.

@loriesco this comment resonated with me a lot. I am a very spiritual individual and I was meant to see this from you. Thank you for taking the time to answer me and share parts of your life with me. I feel honored. Thank you for telling me to add more love to my life because that’s how I try to wake up everyday grateful and full of love. This message touched me. It was very kind and well written. I really needed to hear this especially this week getting diagnosed. I have been dealing with issues since I have gotten out the hospital in Feb, and it’s been hard and it’s been dark at times but yes. Loving my life and the people in it has truly been a life saver. You are a great soul. May the universe continue to bless you and may you always remain so kind.

Ps: I’m happy you didn’t keep it short , you brought light to my life today with your comment it made me cry happy tears. Stay blessed please and stay safe may you continue to life a beautiful life. And hey I may just be a 26 year old you met on Mayo Clinic but you’re not alone !