It's very possible she is unable to get all her mail delivered everyday. Their first priority is Amazon packages. They all have to be delivered the day they are loaded on the truck. They will stop delivering mail, if they have to, to make sure all the Amazon delivered. They just bring back whatever mail is not delivered and try again the next day. It is a nationwide problem right now. Those drivers are being terribly abused right now by Management. Some are working seven days a week just to keep up. Vacations are being denied as well depending on how backed up they are at the DDU (Destination Delivery Unit--your local Post Office). She probably needs some encouragement right now. I saw one Ex USPS guy on YouTube who has PTSD from combat in Iraq. He was so stressed out from work that his PTSD was getting out of control. The VA Doctor sent a note to his Manager telling them to cut back his hours and not make him work seven days a week and his Manager told him "its not happening here." He had to get his Union Boss involved and they finally followed the orders. He actually had to quit because of it. I have been in the Logistics Industry for 30 years and stay up to date on what is going on.
Thanks to your post I checked with my MD here in Washington. Insurance companies and hospitals speak the language of "risk". If you are already at a high dose it would be prudent for the hospital to avoid risk of switching. If your doctor will support it, I would get an inexpensive attorney in my pocket. That also increases their level of "risk" which is the word in their mind for money. Creating an exception for you cost's them less than a problem. Keep us up to date please.
I was just given my medical marijuana card. I am still in the figure out what works for me phase. As I want something that I can use and still function at work. So far I have found it makes me giggle then want to sleep, but the pain has not been relieved. Again there are so many options, I am sure I will find something that works, but it is expensive as insurance does not cover it.
ER? Notice what? I asked my Rheum for pred as I was hoping to move to a diff biologic and needed a little something in between, but realistically I knew that it wasn't going to work as nothing works for the pain, so I just needed it to help switch into my more productive and fun loving manic side.
You have to realize, the only people who care about us, are ourselves and whoever can make a profit from disease and disease control. That is it.
I get it, but probably due to other issues. One theory that was told to me by a doctor is that this may be due to allergies. I have never had allergies before, however I was told that this disease wreaks havoc on you and any little issues you had may be worse or you may pick up some sensitivity... so that may be a clue, not sure...
I would imagine if your ribcage was fused, it would probably hurt to breath in larges breaths.
My take is that most doctors don't understand this disease and the pain it causes. Most often you hear stories about AS people being told by their doctors that the pain is in their heads, or physio will stop the pain.
For my doctor to give me Naproxen over Tylenol was a struggle, and when I requested Diclofenac to see if it would handle the pain better, I was treated like I was a junkie trying to get my hands on meth or something.
Kris, you might want to read a couple of threads by Sean O, who was recently diagnosed with cauda equina. See if anything he says strikes a chord with you. Cauda equina is pretty rare, and there are a lot of other issues that can cause foot and leg problems. So it's not likely that this is the cause for you. But it's a serious enough condition that you should consider it and make sure it is ruled out, just in case...
Just a quick note. It has been a long time for me too. Prescription orthotics correctly made helped me. I remember using a home massaging pedicure type tub after work. I took naproxen and had steroid shots more than I should have. I was taught to stretch and I remember I had spurs as well. But I remember the orthotics as saving me. It went away after a pregnancy but then the sacroiliitis came. A coworker had the surgery for PF but was still in pain and ultimately had to leave retail pharmacy. Danielle
My brother and his wife have AS. They live in Brazil and Naltexone is what they prescribe for them. My brother also takes Sulfasalazine. My sister-in-law continues to have Iritis flares and both continue to have flares but are short lived. I asked my Rheumatologist (who is also theirs when they are residing in the USA) and I was told that it does work but it doesn't stop the progression of the disease. I was told its similar to the effects of taking Prednisone. My brother was recently told he needs to have spinal surgery in his neck. He may feel well, but the x-rays tell a different story.
There is some infor in the oxford text on axSpA. The text is written for docs and this section is above my level. if you call, I'll read it tow you. the beginning is easy enough to follow. let me know if this section is helpful "pulmonary, renal, and neurological comorbidities in AS patients have recently been reviewed. limitation of chest expansion can impair pulmonary function, but liung involvement iin the form of a slowly progressive bilateral apical pulmonary fibrobullous disease or cavitatioins (with rare fungal infection) is rare and late manifestation of AS in 1-2% of patients. However...
Sean: I do think that I have some sort of age related prostate problem. My groin does not feel numb so that is a positive. I could probably use a walker for any distance but for now I rely on shopping carts when a see one. How do you manage without a TNF inhibitor or have you started one? My rheum said it won't help the arthritis.
Banana: Are you still taking Actemra? I just started it the first of January. My rheum wanted to be cautious and just do biweekly injections to start. It seems to be working---I have decreased my prednisone dose dramatically. My biggest fear is the problem with my lumbar spine because it got my attention in a big way the last time I tapered off prednisone.
I can’t speak for road cycling...it may he too much in the saddle...if I’m having a lot of low back/SI joint pain, mountain biking makes it feel much better. I would assume it has to do with being rounded forward in addition to the exercise aspect. A spinning class might be a similar relief with less danger of falling and getting hurt.
Not at all. I’m very fit and am often in the mid to low 40’s.i had to laugh recently because I was having my first nerve block done and I was a little nervous and my heart rate was 50 and my blood pressure was low normal also. (People with slow heart rates live longer!)
I’ve been suffering pain for years first with deadlifts, the squats. It got so bad that I wasn’t able to do those exercises anymore. Today I decided to try them using 5 lb plates to elevate my heels...I had little pain! I was finally able to get ny low back into the right position! I now have weightlifting shoes on the way! Consider buying weight lifting shoes.