Getting worse

Jan 29th … Hello. Today was hard… Could hardly walk. #9 in pain. #10 would have made me shut down completely.

Yes …I keep walking… I have a high pain tolerance. Some people dont even know there are issues with my body.

When I walk around with my husband he has complained that I’m squeezing his hand too hard. Cause I’m trying so hard to keep up and keep walking in pain. :((

My middle …from belly button to the thighs. There must be so much wrong.

Down my legs feeling weak and painful now my feet are becoming unbearable.

A while back my shoulder into the right arm hurt so bad. Now I take injections to calm the nerves down in the cervical spine. Doctors say spinal cord is being pushed on.

Last month … Down in my lower back the injection in the sacrum helped…not quite as much tension and pain there. (Right before Las Vegas… :)) the injection got me through that wonderful trip).

My left hip has no cushion in in the hip joint. But injection will help for about 8-10 weeks.

Mainly from belly button down pain was from an 7-9. 10 would put me completely down and I’m not far from it.

I also have spots of psoriasis some new ones coming up on my hands and small areas on my face. Itching in the scalp and other places. I get itchy bumps mainly around my face, neck and shoulders. My feet have a lot of dryness issues and sometimes the skin cracks. My regular nails don’t grow properly and the skin is dry and cracks at the tips of my fingers.

I have a spot inside my mouth I am also having issues with.

I was diagnosed HLAB27 positive several years ago taking Enbrel injections weekly. But doctors are also saying I’m not put together right from the hips down. Maybe it goes way back to the brace /bar from foot to foot that I wore when I was a baby? I’m going to pull that brace out of my baby stuff and take it to my doc Monday. See what he says.

Please pray the next two doctor appointments will help.

Some people think just get out exercise and push through it… Diet… I had weight loss surgery… And no I didn’t continue eating right but I dont eat or drink that many many extra calories a day … There is no pushing through this without medical attention. I take medicine and have other health issues that may be helping my body hold onto calories, etc. Plus i haven’t really been able to exercise. I have some better days but there is not a day that is totally pain free.

Please PRAY for me and my husband. He’s being really strong for me. I wasn’t this bad when we met over two years ago. We were enjoying our dances where we met at Lonestar. :)). I wanna feel better!!!

Dearest Pam ,

You have absolutely no idea who I am, but I am praying for you as I type. I have asked that the Holy Spirit come upon you and ease your burden and lighten your load as you speak with your doctors and work out a treatment plan that takes you, the patient, as a person into consideration. I have walked in your shoes and I have fought your fight. I just got my first dose of MTX last Friday . You can read my blog, but this is your stream hon, and I am here for you today !!!!!!!! I will pray for you as I have faith beyond belief. It has saved me and so have my friends and the knowledge and support I could have gained only here.

Some people are afraid to speak of their faith. I am not. I have walked through hell and back and I am here to say we are not alone. Here is hoping you have sunshine in your world today and may you and yours find a little glimmer of hope today..:) XXXXXXX I'm here every day just poke around you'll find me ;-)

Holding you and your husband in my prayers, Pam!

It sounds like you're dealing with a lot of pain and a lit of disease. How long have you been on Enbrel? Is it not working? Have you talked to your doctor about the continued pain and discussed other options? Discussing the brace from your infancy might provide some enlightenment for the doctor. I hope you find answers and relief soon! Be gentle with yourself!

Oh Pam, dunno what to say. What meds are you on and how long? Have they used the term sacroiliitis and/or assigned a grade to it??? MRI with STIR sequence? this simply doesn't sound like JUST PsA. Please though keep moving I know it hurts (I'm not saying it as if it will make things better) we have all been there at one time or another. But with HLA-B27 positive keep things moving, or they will "rust" and and new pain will emerge......

I’m so sorry that you are hurting. Pretty sure I’ve never experienced the pain that you have, and I can’t even imagine what it must be like.

Like TNTLamb, I wonder what your treatment is, because it sounds like you need a change in a big way. If nothing else, get the symptoms of the disease (and the disease itself) under control and then figure out what other problems are separate and treat those accordingly. We PsA women tend to get a lot of GI and gynecological issues, and GI must be doubly so for you.

I am a care coordinator. I know you didn’t ask for advice, but I find that it helps to make a plan. From most severe to least severe, make a list of your physical problems, then write the doctor’s name who treats that beside it. Make your appointments in that order. I do this with my more complex patients who don’t know where to start. I hope this helps. If you need help, or need to talk, please message me. I don’t pray, but I will think about you and help, if I can. :slight_smile:

Take care of you.

Hope today is better for you :) Keep smiling . Sounds as if everyone on every side of the fence has contributed in their unique way. You will be alright.

Knowing people are thinking of you is such a huge step and knowing the ones that really know what direction to send you in are on your side is so very comforting and liberating. Keep on keeping on today. There is no better person to do this for than......... YOU!!!!!!!! so get out there and do yourself the favor of advocating for you of course and we will help hold you up. Here's one thing to laugh about, you will be surprised a how much better you feel..... JUST KEEP SWIMMING ;)


I'm so sorry you having so much pain. I hope it passes soon. You are fortunate to have such a wonderful supportive husband - I'm sure that helps. I'm thinking of you and wishing you the best.



I'm sorry it's been so terrible. I really hope your upcoming appointments help. Hang in there...and keep bugging your doc when you're having trouble. I find that helps.