Pain in joints that wakes you up at night

[Smiling Angel]

Hi fellow BTers! I don't really know where to post this thread, but I figured that this forum would be a safe bet!

I am beginning to worry about how badly I am feeling lately. I was/am normally on the SD forum, but these Sx are way beyond back pain. I have recently been Dxed w/ an acute 'crisis phase', if you will, of hereditary spherocytosis, which, of course, I was born with, but wasn't actually Dxed until I was in my 40s. No biggie - my daughter was Dxed first, and her oncologist/hematologist asked to test me, it being hereditary and all.... Well, that's all well and good, but since this past March, when I started a new job which required a long commute for nearly 5 months, I found myself increasingly tired, and then my feel (ankles) started to swell, so off to the doctor I went. I come to find out that my hematacrit reading is 25.5, when it should normally be around 33-38, I believe, and my hemoglobin ct is 9.5, and that should really fall in the 11-15 point range. The latest is that my oncologist is talking very seriously about taking out my spleen, which is basicly the only treatment for this problem, since one of the spleen's functions is to destroy aged RBC - which I don't need any help with, as HS means I already have fragile RBC. So the RBC don't usually live to maturity, and I have more young RBC than mature ones. Later today, I have to have a CAT scan of my spleen so that the doctor can see if my spleen is enlarged - he said he feels it upon physical examination.

To add to my problems, I am now experiencing severe pain in both my knees, my right shoulder and elbow, and, tonite, I'm awakened by these problems and also a really sore, achy feeling in the back of my head/neck area - the kind of pain you get when you have a bad cold or maybe the flu. The pain was so bad, I actually had to get up and take two extra vicodin, when I already take Kadian - 30 mg, bid. Now I'm starting to worry - what could be the cause of all of this pain?? My knees have gotten so bad that it makes it very hard to go from a sitting to a standing position - my knees have to basically have time to re-adjust. I have been investigating fibromyalgia, which may or may not have any part in this latest pain mess....

Can someone point me in the right direction in investigating the source of my pain? I really could use all the help that I can get . If you've made it this far in this long post, thank you and I would appreciate any insight you can give me into where to even look for answers besides, of course, my doctors .

Thanks again! Smiling Angel

[buriedinbooks]

Hi Smiling Angel...

Have you been examined by a rheumatologist?

I have Rheumatoid Arthritis which first began many years ago with pain in feet and hands. It later traveled to many other areas of my body (shoulders, knees, neck).

Hope you find an answer soon and can ease your pain.

Gentle ehugs, Carly

[Smiling Angel]

Thanks, Carly, for the info! At this moment, I am all 'doctored out'. I have been running from nephrologist (poss. kidney problems), to cardiologist (needed a stress test), to oncologist (for my anemia) and have undergone 3 blood tests (I'm anemic, yet they keep taking my blood ), a kidney and a spleen ultrasound, and, this afternoon (I'm off today - NJ gives state workers off for Columbus Day!) I have to go for a CAT scan of my spleen. In addition, my husband says I should go to an ortho to check out my knees , but haven't made any appointments for that yet, I'm more concerned about have my spleen removed .

I appreciate your input, and I do have a sister and her daughters that have some unusual arthritic conditions, so that might be a possibility, too!

Smiling Angel

[razzle51]

just get your PCP to order a ANA test and it will let you know if you need to see a Rheum

[Tbackpain1]

Hey Smiling Angel,

It isn't uncommon for folks with hemolytic anemia disorders to experience joint pain during a "crisis" phase. I checked out my pathophysiology books and I noted that while most of the articles on joint pain are related to sickle cell anemia, it's also mentioned for hereditary spherocytosis. The only treatment listed is to provide analgesics while in crisis phase and to get the blood counts back to a normal range.

Hopefully your CAT scan this afternoon will give you more answers.

Theresa

ps- your grandbaby avatar is such a cutie!!

[Smiling Angel]

Thanks, T - i barely made it thru drinking thru the CAT scan stuff - it made me gag! Thanks for the info, I hope that the joint pain is related to my anemia, so once that is fixed, I should hopefully feel better. Did I tell you that my nephro wants to start me on Procrit? I was encouraged by that, but my insurance co. will only pay for the Procrit thru the mail - it IS very expensive, I am told.

BTW, I DID receive your e-mail about my dtr - she is much better now - it must have been the not smoking that made her *****y.

Hugs, Jacquie

PS Thanks for the compliment on my Grandbaby! We just saw him today, he is so very entertaining - and I have never seen such a happy baby!

[uvamomb]

A negative ANA test does NOT mean you don't have arthritis. It is not 100% accurate. Just wanted you to be aware of that so that you wouldn't not go to the Rheumy.
Hope you feel better soon,
Kathy

[suede]

Hi, I'm sorry I haven't the time to read all the replies, I have an app. with my rheumy.
I want to say I have had spine problems now for over 7yrs at all 3 levels and up until about a yr and half ago I blammed all my pains on my spine until my PCP did the blood work up and my ANA keep comming back positive.
I was having the same problem as you with joint pain that woke me up and was horrible.
Long story short these problems had nothing to do with my spine, I have lupus and after being treated for that the pain is under much better control.
I understand being burnt out on drs feel the same way but it may be worth it to be sure.
Lots of luck, Linda

I wanted to add that the dr also says that I have FM as an underlying condition to the lupus, as a matter of fact my kness are as you say and have gotten so bad I am considering injections today, we have a nre 3 month old grandson and I'm afraid to try and stand up with him.

[Peter B]

Hello Jacquie,

I saw read in your post about the possibility of seeing an Ortho. If you need any names, I'm your man. I've seen a few. Obviously I'm in NJ so, depending on where you live or how far you're willing to travel, let me know if you need a few names. Actually my experiences with Orthos' covers about half the state.

Pete

[AngylHeart]

Uvamomb is correct, "A negative ANA test does NOT mean you don't have arthritis. It is not 100% accurate. Just wanted you to be aware of that so that you wouldn't not go to the Rheumy."

I have RA with negative ANA results, however, the rest of my labs are so abnormal, that my RA considers me a special case and interprets my labs based on MY history and not what is considered the norm. He claims that I am an a typical RA patient, so it is a MUST that I see a Rhematologist - it is essential with all my RA issues, fybromyalgia, etc.

Smiling Angel (I lost my "smile" long ago), your symtons sure sound a lot like mine. Like buriedinbooks, my pain & swelling started in my hands and feet but at this point, just about every joint in my body aches, particulary when sleeping or resting. My feet swell so severely that I often can't get even the loosest pair or shoes on, except my slippers.

Since you are having so many labs done, i would request that they go ahead and screen for ANA, test you sed rate, etc.

good luck,

AngylHeart