Hello Lainee,
Hope you are feeling well and having fun! Come back and talk when you can!
SK
Hey SK, I'm okay. Struggling with pain. Struggling because of I can't get any firm diagnosis and all my doctors seem to blow me off. Sorry to be Debbie Downer.
Lainee, I'm sorry you're going through this, all of it. Bad enough to have the pain. Worse to not be able to get a firm diagnosis and worst of all to feel that your doctor is blowing you off. Very frustrating, every facet of it. Wish your doctor could get a better bead on it. I feel as you do with the doctor angle. And then I end up doubting myself, despite all of the pain and fatigue.
Keep at it. It may take a while but I think you'll get your answer. Seems like a lot of people go through this with PsA because it's a rather nebulous illness.
Hey lainee,
No Debbie Downers here, we wanted to know how you were! Time to get hold of them or give them the boot and start over! Sometimes even if you get a diagnosis, doesn't help the pain. I know you can't give up, but sometimes you have to kind of give in and take the narcotics and do your best. Hopefully you have them to get you out of the pain cycle, going to the DC helps too, and I'll tell you, I can hear him calling my name!!!!!! Sometimes my pelvis will get tilted, or the hips get lopsided to where when he lays me on the table one leg is several inches longer than the other, those DC's are the only ones that can handle those messes!
Hope you can soon get some relief, if not go to the ER!! Really, you may get lucky and find someone to figure something out!
Wishing you the very best,
SK
I usually have to move to the couch. Sometimes I have to sleep sitting up. Not the optimal solution, but it works sometimes. Sorry you are having this. We all understand. ;)
My sleep has been very disrupted lately. The pain and stiffness wakes me, then I'm exhausted during the day at work. I have a very stressful job, which adds to my flares. Just had a physical at my GP, who first came up with PsA. All the symptoms fit. My pain specialist agreed that the symptoms fit and sent me to a Rheumy. (I have very bad insurance with a high deductable, so it kills my budget to have to go to all these appointments) My first appt. with Rheumy in March took 5 months to get into, and after 10 minutes, he stated that my "according to my xrays, the joint damage was not severe enough to confirm PsA". (He pretty much blew me off.) Even though my primary dr., pain specialist and the dermatologist I saw,all seemed to believe that it is PsA. Psoriasis runs in my family, (my brother is on Remicade for plaque psorasis not PsA) and I get it on my head, scalp, neck and forehead. It also goes into my eye and I get a really red, bloodshot eye for a couple weeks with a flare, which I saw my eye dr for. I have really bad ridges in my nails, cracks around my fingertips, very sore finger joints in the both hands and my left elbow joint is terribly painful. Also, major fatigue, severe SI Joint pain which I have been getting cortisone injections in for years now. New to the repitore is canker sores. These symptoms get worse every time I get a flare on my scalp. (Stress seems to make it worse too.) It just sounds like all the symptoms are there, but I am now without a rheumy because he doesn't feel I need one. :(
Thanks for listening, sorry to complain. It is SO VERY FRUSTRATING. I even stopped looking out here for info, because it feels like I don't belong after the rheumy appt. I know I am not NUTS!
HUGS to all having trouble sleeping, I've been having major painsomnia lately. Ugh. I have yet to drag myself out of bed (it's 9am - I'm usually up by 7). The pain was so bad last night, even on tramadol, that sleep was next to impossible. I think I passed out from exhaustion at around 4AM, was up at 5AM in pain, back to sleep by 5:30, and then slept fitfully until 7:30. I've been awake, but not wanting to move since then.
Sorry Nym...BOY! I can really relate. I was up at 2 AM, then tossed and turned for an hour or more, then up for the day at 5AM. No wonder I'm always exhausted! Some afternoons at work I can barely keep my eyes open!
I have not posted in here yet. or maybe I did and forgot but wanted to say zopliclone. love it and use it half a tab at least once a week. The elavil does help but I still get insomnia.
I primarily sleep in a recliner, and have for many years. some nights I go to bed, but can usually only sleep for about 4 hours before hip and back pain wake me up. I started taking tylenol p.m. Exhaustion has been my biggest enemy for the past few months, so I feel you have to find a way to get the rest your body needs.
Hi 67,
I have talked to so many with back problems that sleep in a recliner, and unless it is one of the supersonic ones that have the little back support that pops up when the chair opens, I just don't know how you do it, my friend! I cannot stand for my lower back to go down into that deep hole! I think most of these supersonic chairs I refer to are the Flexsteel with an opening price point of about $1500.
But like the song and the saying goes "whatever gets you through the night"! Do you remember that or perhaps it is before your time!
So glad it works for you, surely you are among many! If there is a trick, please let me know!
SK
Why is it that at 5:15pm, I could easily have curled up in bed, fallen to sleep immediately, and most likely have slept peacefully until morning - but now I'm exhausted, but not sleepy? I swear when we're on vacation I'm going to sleep whenever my body wants me to sleep!!!
AMEN!! Hope that works out for you!
Lainee, please do not ever feel that you do not "belong" on this discussion board. Of course you belong! I hope you do not have PsA, but this board is for anyone with an interest in PsA--and that includes people who are having trouble getting a diagnosis.
It took years--MANY years--for me to get a diagnosis. I got tagged with MFPS, EDS, HS, bulging herniating discs, DISH, CROHNs, OA, Raynauds, acute spasmodic torticollis, PsA, chronic tendonitis, fibromyalgia, RLS/PLMD and many others that I'm sure I'm forgetting before it was over. And just two weeks ago, I got RA added to the list. I got so I would carry a list of all prior diagnosis with me to each new doctor, so they could see something was going on with me. But, unashamedly, one, by one, they "saw" hypochondria--which wasn't on the list!
I felt blown off, belittled and dismissed....and despondent. I remember my reaction to a doc at Cleveland Clinic (the head of rheumatology no less). He said, "Why are you crying?" "It's a good question," I said, "I sure didn't drive 500 miles up here to see you just to turn around and go home with no information and no help, feeling belittled and dismissed." He didn't even give me the dignity of a reply. Tried WVU rheumatology who was equally cheery (NOT!) and left there in tears, too. She sent her nurse back to me with a Vioxx paperclip to "make up." I found that to be the most demeaning thing she could have done. I laughed about that the very next year when Vioxx was removed from the market by the FDA. Don't waist your time going to Cleveland Clinic. I hear they ARE understanding at Duke and at Mayo.
Anyway, about pain and sleeping....like another poster on this thread, I have a great deal of trouble sleeping in bed. The best bed I have found is a combination gel and memory foam mattress, which is wonderful for me. I can get 4-5 hours uninterrupted sleep on that bed--a LOt for me. The rest of the time I sleep in a recliner. But sometimes, you need to lie down, so you have to have a bed that works, even if only for short periods of time. As Suzanne suggested, I too, keep mountains of pillows of different sizes and shapes around my bed. I use them to prop body parts or sometimes even keep sheets and blankets off something that hurts. And, of course, I have all kinds of things for heat--electric heating pads, fuzzy socks, small rice pillows that you can heat in the microwave.
And I take a cocktail of meds at bedtime ...ambien, mirapex and hydrocodone. I promised myself I would never do this, but at this point, I do what needs to be done. I'm past worrying about the future. It's okay to feel better NOW.
Try things that seem to make sense to you. Modify your bed, try a mattress topper, try a recliner, try different combinations of meds. Do what YOU think will work for you. And keep asking questions...one day, you might get an answer that is helpful. It's not an easy road. But don't give up; if you give up, you give up only on yourself...your only true ally is YOU. Hang in there, and keep us posted on how you are doing.
Byrd,
How far are you from Martinsburg? Michael M. Rezaian, MD is the man, and the kindest man you will ever meet, he will want on you if you are late, and surely you will want on him, but he is very worth the drive and the wait! Someone has already posted a very positive comment about him on here and I agree.
Thanks, SK, but I'm way far away from Martinsburg. I'm about 35 miles from the southern border of the state, so it would be about a 4-1/2 hour drive from here (one way). Down here, we tend to think of Martinsburg as being on the other side of the world!
My doc is great most of the time. She had no problem seeing my arthritis during my first appointment. And she is gentle about encouraging me to try things, like new meds. She doesn't push and insist like some. Most of the time, she explains things well, and best of all, she is understanding. "Arthritis Today" ran a contest to name favorite rheumies and she won in the "My doc rocks" section. :-) I guess the secret is not to tick her off by being seven minutes late for my appointments! lol Who knew?
I, too, have lower back problems and my doctor told me to stay the hell out of a recliner. It causes more problems than I need. It also causes sciatica which I have had many times because of the arthritis and aggravated by even sitting in a recliner so I quit and I have to say that it's been much better. I guess he knew what he was talking about. Get to bed and forget the recliner entirely!
SK said:
Hi 67,
I have talked to so many with back problems that sleep in a recliner, and unless it is one of the supersonic ones that have the little back support that pops up when the chair opens, I just don't know how you do it, my friend! I cannot stand for my lower back to go down into that deep hole! I think most of these supersonic chairs I refer to are the Flexsteel with an opening price point of about $1500.
But like the song and the saying goes "whatever gets you through the night"! Do you remember that or perhaps it is before your time!
So glad it works for you, surely you are among many! If there is a trick, please let me know!
SK
As it is now 1:36 am, I need to head for bed. I Don't have time to read all the suggestions for going to sleep. So I am just going to take a shot of rum, it seamed to work for me last night. I'm on enbrel, but not yet on MTX (though my rheumy has told me that she is soon going to start me on it). Still not sure if I really want to take a Chemo drug. Good Night to all.
Joel