567 Posts

katiebeth1986 Never had problems sleeping until I went into kidney failure 2 & 1/2 years ago. Now I can't sleep because of my hip pain. Thanks to AVN, the blood supply to both hips joints is cut off snd the bone is slowly dying. My right hip is the worst. That pain plus the pain in my legs and back & ribs from my auto immune arthritis doesn't help either.
So far my new pain patch seems to be giving me the best relief yet, but it doesn't last the full 72 hours. I don't know if I should call my pain management doctor & tell him this or just wait till my appointment I'm December.
#pain #chronicpain #avascularnecrosis #avn #hipreplacement #hippain #rheumatoidarthritis #ankylosingspondylitis #ankylosing #spondylitis #autoimmunedisorder #CKD #kidneydisease #spoonie #spoonies #spoonieproblems #spoontheory #nofilter #photooftheday #painsomnia #insomnia #cantsleep #cantsleepatnight #wanttosleepallday #painmeds #fentanyl #fentanylpatch #textgram #breakthroughmeds #hydromorphone
5d
  •   scattycattybatty Hope you get some relief , it's hard constant pain and then no sleep too feel just like you, its a continuous battle everyday for some type of normality , sending you some healing energy big hug @katiebeth1986 5d
  •   summerplum A significant number of people's patches don't last the full 72 hours. Some last 2 1/2 or 2 days. For me it's only two. Call your doctor and see if they'll change them, it's not uncommon and you shouldn't be seen as drug seeking. Good luck. 4d
  •   ravenmviper I'd say call so they have it documented. And ask them if they can see if he wants to put you on a medication for breakthrough pain towards the end of the 72hrs. 4d
  •   ravenmviper It's something I've learned dealing with my own pain management Dr. They might suggest something more but only if you "camplain" and tell them there's pain and it's too much. (I was told not to look to get below a lvl 3-4 pain which I think is BS in a way) 4d
  •   katiebeth1986 @summerplum I left a message with his answering service. Apparently he is out of the office today. I've been reading how most patches last around 48 hours. I'm already down one cause it fell off so I had to put a new one on early last week. I'm gonna wait for his instructions so I don't run out. I pick up my breakthrough meds on Friday. That's a long story in itself but since it's a controlled 2 drug, the laws in NJ are a pain abd my dr is kind of mad he mad a math error and the pharmacy called him on it. How are you doing? 4d
  •   katiebeth1986 @ravenmviper I do have breakthrough meds. I pick them up on Friday. It's a different short acting narcotic so I'm hoping it'll help. I did leave a message with my Dr's answering service about the patches. If anything they have it on file that I called. My doctor has never said anything about keeping my pain below a3-4. My first pain patch took me from a 10 to a 2 in about 12 hours. I love the patches. It's been the best long last medication I've tried. I'm hoping my dr will prescribe every 48 hours and I'll be good. How are you? 4d

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ashleysloan7 Someone did AMAZING at my Rheumatology appointment today! I'm thankful for technology & I am sure Ryder is too since he watched Frozen ha ️ Seriously, though, so proud of him. I've taken him to appointments that ended up disastrous ha. #ryderthomas #2yearsold #ankylosingspondylitis #ankylosing #spondylitis #arthritis #autoimmune #disease #rheumatology 5d
  •   notsoidlehands That's awesome! I'm so glad when the kiddos behave at my appts! 5d

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duffitness Shopping for Healthcare when you have Ankylosing Spondylitis and your computer (iPad) freezes up. #ankylosing #spondylitis #chronicpain #healthcare #medical #humira
Can I just have a little cooperation from electronics for a bit please. I have no control over a flareups so you're not helping me.
6d

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katiebeth1986 Three different doctors have put me on activity restrictions including limiting how many times I climb the stairs a day, not walking Gretel, lifting nothing more than 5 pounds, only walking short distances, using crutches, using a wheelchair for going out shopping, doctors appointments, etc. Those three doctors have told me that I cannot work because I need two hips replaced, I'm in chronic pain, recovery for the surgery takes months especially because I heal slow due to my autoimmune conditions, and a bunch of other reasons including I'm on heavy duty pain killers. Even though they don't affect me because I've been on them for years, I still wouldn't put myself or anyone else at risk snd get behind the wheel of a car. When I know I have to drive, I make sure I don't take my meds for 24 hours before.
I don't complain much. I just deal. I just want support from some of my loved ones in real life. It makes me feel like crap that I can't do what I used to do, can't walk my dog, can't work snd bring home money. It makes me feel even worse when it becomes the subjects of fights.
Not one of my doctors saw this coming. No one suspected Avascular Necrosis of the Femoral head in both hips with my right hip near collapse. It's a lot for everyone to adjust to. I understand that. Instead of blaming me, research it and ask me questions. Maybe by better understanding it, you can find it in you to support me.
#avascularnecrosis #avn #hipreplacement #pain #chronicpain #chronicillness #rheumatoidarthritis #ankylosingspondylitis #ankylosing #spondylitis #autoimmunedisorder #reducedkidneyfunction #CKD #kidneydisease #spoonie #spoonies #spoonielife #spoonieproblems #spoontheory #nofilter #nosupport #heartbreaking #photooftheday #family #support #physicaltherapy #majorsurgery #28yearsold #married #textgram
7d
  •   preciousrose73_aswarrior But here is a brief description of BME..... again, I don't know much about it besides that it's painful and my leg is completely deformed and huge... “Bone marrow edema” can be seen in a number of different conditions.  While the term “edema” implies fluid in the area, there are actually many different conditions that can cause this MRI finding. This can be seen in osteoarthritis in bone under areas where cartilage is damaged;  in rheumatoid arthritis edema may precede an erosion developing; in ankylosing spondylitis edema may precede the development of tendon insertional calcification.  In other circumstances, similar findings may be seen in microfractures of the bone, and many other conditions.  The meaning of the “bone marrow edema” is thus based on the particular clinical context.  While certain forms of tumors can also have edema on MRI, there are other characteristics that usually can help a radiologist to make this distinction. 7d
  •   sillykatsu 7d
  •   preciousrose73_aswarrior I have a huge tumor along with synovotis in the lining of my knee joints and is spreading to other joints... my femur shaft is broken. I thought it was a simple little fracture but it is literally broken. .... 7d
  •   katiebeth1986 @preciousrose73_aswarrior your description sounds exactly like what my mom has on her one leg. She broke her ankle years ago. It never healed correctly. She has AS but I wonder if she could also have this or something similar. Itsste where I am but I'll read up on it tomorrow. I'm a medical geek. I love reading up and learning about medical conditions, research, treatment, etc. Some people love math, history, science, I love medicine. I will definitely talk to you more tomorrow. It's almost 1:30am here (New Jersey) and I feel my meds kicking in. Have a goodnight! 7d
  •   katiebeth1986 @shawnstestimony thank you. I'm definitely researching surgeons and everything. I've had three opinions so far. My sister in law's husband is an orthopedic surgeon and he is helping me with my research. Unfortunately he doesn't take my insurance right now. How was your surgery? 7d
  •   tanyahusain I was 20 when I had my bilateral hip replacement, last year just before my 21st birthday. 7d
  •   preciousrose73_aswarrior I am the same way hun, I enjoy reading on medical and learning new stuff. And Good afternoon to you....I hope they find something for you Doll! They told me there was nothing they could do for me because of BME.... but we will see. Enjoy your day the best you can and don't forget to smile! 6d
  •   kbri27 @katiebeth1986 thanks5d

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samthebrown What's your #superpower? I grow extra bone where I used to have ligaments!
Today is #infusion day. #remicade helps a lot but it isn't a #cure for #ankylosing #spondylitis. My #immunesystem sees my own cells as invaders and attacks my joints, organs, skin, ligaments and eyes and has been doing so since I was 11 (30 years for those who wonder.) It's a constant battle.
#tnfblockers slow the progression but they don't stop it. This disease will not beat me, but I can't lie and say it doesn't effect my life. It does. All I can do is work to minimize the impact, via a #healthy #diet, gentle #exercise and the right #medical #treatment. #spoonie #as #kickas #asawareness #chronicallyliving #autoimmune
2w

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duffitness With a full flare up of my ankylosing spondylitis brought on by the Spartan Race I completed last Saturday, I'm stretched out on the couch with my best buddy Ben and some good reading. It was expected and I'll be back to normal in a few days. #ankylosing #spondylitis #spartan #presevere #determination #growth #dontstop #goals 3w
  •   iplaytennis8894 Superb! 3w
  •   connieda Rest up. You worked hard. We all know you'll be back soon. Ben, take care of him!!! 3w

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katiebeth1986 Question for my fellow #spoonies
Does the lidocaine gel work instead of the lidocaine patches? The #lidoderm patches work for some sometimes but I'm becoming allergic to the adhesive. I'm going to the #doctor tomorrow and I'm thinking about asking him for the #lidocaine gel instead of refilling the patches. Any input is appreciated. Thanks!
#spoonie #chronicpain #spoonieproblems #lifeofaspoonie #avascularnecrosis #avn #rheumatoidarthritis #ankylosingspondylitis #ankylosing #spondylitis #chronicillness #autoimmunedisorder #pain #arthritis #arthritispain #ra #nofilter #textgram #outofspoons #hipreplacement #crutches #needpainrelief #lidocainepatch #lidodermpatch #exhausted
3w

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Normal Duffitness
duffitness Day 1 of the 21 Day Fix Holiday Slim Down and I'm struggling to get my food in but I'll get it. 1 more snack and then dinner. I've got this.
Need help keeping your goals? Reach out to me at Duffitness.com and we can discuss what your goals with fitness & health are. Even if you're a busy mom or dad, there is always something we you can do feel better and improve your health.
My Ankylosing Spondylitis autoimmune disease disables me but by doing little daily tasks I've been able to lose 40+ lbs and change my world.

Another Holiday Slim Down group is forming now. And I want to help you lose weight and feel better over the holidays.
#chronicpain #ankylosing #spondylitis #goals #busymom #busydad #weightloss #holiday #thanksgiving #turkey
3w

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sosojojo8783 #painkiller #spondilitis #rheumatism #ankylosingspondilitis #ankylosing #espondilitis #anquilosante #spondylarthrite #severe #180mg
Now therapeutic failure. .. I just have my painkiller to survive and kinesitherapy. I must have sometimes a wheelchair but not house cuz I can't work. So...nothing for me, everybody say no !! I can continue to stay in my flat at 3rd floor without elevator
3w

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katiebeth1986 Fellow Spoonies, if anyone knows an orthopedic surgeon in the New York City area that does hip replacements on young adults or who has had a hip replacement, please let me know. I'm looking for the right orthopedic surgeon for me snd I'm willing to get as many second opinions as needed. Plus, I'd love to talk to someone who has had a hip replacement or who has had both done. Recently diagnosed with Avascular Necrosis of the Femoral Head in both hips. My right hip is near collapse and needs a total hip replacement. My left might be able to benefit from other surgical procedures and delay a hip replacement on that side. I'm 28 & have Ankylosing Spondylitis, Rheumatoid Arthritis, Chronic Kidney Disease and a few more health issues so I'm a complicated case, lol. I have so many questions in regards to a total hip replacement. Thank you.
#textgram #orthopedics #surgeon #hipreplacement #avascularnecrosis #avascularnecrosisofthefemoralhead #avn #orthopedicsurgeon #chronicpain #rheumatoidarthritis #ankylosingspondylitis #ankylosing #spondylitis #spoonie #spoonies #spoonieproblems #spoontheory #outofspoons #nofilter #photooftheday #northjersey #newyorkcity #nyc #doctors #hippain
3w

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duffitness Yes!!! I did it. I know, I know they're 100,000's who have done Spartan Races. But only a few of them have done the Trifecta while battling Ankylosing Spondylitis.
I was very worried about this Spartan Beast because I wasn't able to train as hard as I wanted to due to lower leg joint pain from the auto-immune disease.

I actually had my doubts I would be able to finish and when my left knee went out at mile # 3 of 13.5 those doubts where stronger. The pain was unbearable and tonight I may not be able to feel my lower leg but I couldn't stop. So I walked.
I had to persevere because the regret would be more damaging than the pain.
When you have a goal, focus on it, don't let the excuses take over. tired of starting over? Stop quitting!!! Whatever your goal is; make it, create the habits, and never stop moving towards it.
#ankylosing #spondylitis #chronicpain #spartan #lonestarspartans #lss #beachbody #excused #disease #focus #regret #goals #presevere #workout #lifelessons #autoimmune
3w
  •   dreamelegance Yo! What do you think about officially becoming a rep for our clothing line!? If your interested go ahead and text us. Our number is in our bio! 3w

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