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Having a hard time in Ohio

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Posted 4/28/2009 1:12 AM (GMT -6)
I don't know what is going on with my body but I sure wish someone could tell me. I'm in more pain than I have been in the last year. My body feels like it is in one big charlie horse! I couldn't take the morphine that the doc prescribed because I couldn't urinate while taking it. I've had 3+ pitting edema from my mid-thighs  down some days. My hands feel like  a car has run over them and are swollen and my face is puffy. Of course the day I went to my PCP I had none of these. I go see the rheumy May 5th and I hope I'm blown up like a balloon that day. I've gained 14 lb. in the last 3 wks. and have not changed my diet at all. I'm taking PT three times a week so that is added exercise and should have helped with weight. I had to go to a funeral yesterday and much to my suprise and dismay I had only one thing that I could get into! I'm about as frustrated as I've been in a long time. I could stay in bed all day....no energy. I did stay in bed all of last weekend because of this and I slept the whole time. The sad thing about all of this is I moved my parents back here to take care of my mom who has Parkinson's Disease and right now I do good to take  care of myself. Lasix helps with the swelling but not the pain, of course. Does anyone else have this problem and if so, what did you do? I would appreciate any suggestions.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.

Posted 4/28/2009 8:13 AM (GMT -6)
nurse2 said...

...
I couldn't take the morphine that the doc prescribed because I couldn't urinate while taking it.
...
My hands feel like a car has run over them and are swollen and my face is puffy. Of course the day I went to my PCP I had none of these.
...
I've gained 14 lb. in the last 3 wks. and have not changed my diet at all. I'm taking PT three times a week so that is added exercise and should have helped with weight.
...
Lasix helps with the swelling but not the pain, of course. Does anyone else have this problem and if so, what did you do? I would appreciate any suggestions.
Nurse2


Well, I don't have exactly the same, and in some ways wildly different, scenario.

I DO take Morphine as part of my pain regimen, and that hasn't changed except I've had to increase frequency to double.

I suddenly started swelling the other day and I swelled feet, legs, arms, hands and face. I actually stood and WATCHED my hands swell. Like you said, after 3 days I had set an appointment to see my PCP and by yesterday the swelling had gone down to 'reasonable'. But I had gained 30 lbs in 2 1/2 weeks. And my weight had been stable for over a year.

I, too, started on Lasix. It helps but...

I don't have anything I know to do. My PCP wants a 24 hour urinate lab; my labs for kidney are all over the place all of a sudden. Normal to 'prone to disease' to normal in 3 labs taken within 1 month.

Fortunately, I'm already being treated for chronic pain. So the pain I've got mostly handled. I'll report back if I get anything figured out on the bloating. I'd appreciate it if you did the same.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer

Posted 4/28/2009 1:36 PM (GMT -6)

Thanks so much for your reply. Somedays I feel like an alien or something. You just never know what is going to happen! Right now my legs are so "nervous" I could scream! I had my husband rub my legs and arms for about a half an hour last night because of the same thing. I had a tooth pulled last week and just had the script for Vicadon filled today to try it just because I'm miserable. I take something like Imetrex for the severe headaches that I have because of cervical disc problems. This stuff never ends, does it? Hope you're feeling better. I'll let you know if I find the "miracle" cure.

Nurse2

Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.

Posted 4/28/2009 3:36 PM (GMT -6)
...me? from Ork myself...nanu!nanu!(k, I must reallydating myself)...maybe it's just the isolation.
I hope you can find something that works...BTW, do you have a fever with your swelling...just curious because having a tooth pulled and swelling, and kidney can be a sign of other things...which I sincerely hope is not the case...take care...
"The earth laughs in flowers"

Posted 4/28/2009 8:08 PM (GMT -6)
Are either of you taking Lyrica? If so, that may explain the sudden weight gain and the swelling/pitting edema.
I have been on Lyrica since my first back surgery, before it actually, and had to go off it for a time due to developing pitting edema and the weight gain was astronomical. I stayed off it for a few months, dropped the weight immediately, and the pitting/swelling went down.
I've since gone back on it because of the nerve damage that I have, but watch out for the swelling and weight gain problems again.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.

Posted 4/29/2009 3:41 AM (GMT 0)
Hey Nurse2, have you been to the Cleveland clinic, is supposed be a world class clinic (or gin joint, hehehe)
look it up online, just a suggestion, sure hope you can get some answers soon..
Lots and lots of soft hugz.
(((((((((((((((HUGZ)))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********

Posted 4/28/2009 11:46 PM (GMT -6)
I had a similar experience with Lyrica, I put on 75lbs in 3 months!
Posted 5/1/2009 8:33 PM (GMT -6)
I was on Lyrica for about a month but that was about 6 weeks ago. I saw no difference in the way I was feeling and the rheumy had increased my Neurontin to 1800 mg. a day. I haven't had a fever since I was in the hospital about 3 yrs. ago with my Lupus. I am so weak that I have honestly thought about getting out my cane. I get so terribly winded, too. My hair is falling out terribly and has changed texture. My thyroid labs are all normal. My hands are swelling and hurt to move my fingers. I see two doctors on Tues. and if one of them doesn't come up with some new idea I may get mouthy. I'm obviously not the only person with this problem so surely they can come up with some idea. I would just like to go to bed and stay for a few days. Thanks for the kind words. We all have to to stick together for sure. I read everything I can get my hands on so that I can stay on top of things so we will just have to see. Hope everyone has a good weekend.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.

Posted 5/4/2009 3:19 AM (GMT -6)

Hi Nurse2,

I read your post and saw you have Lupus listed. Is you Lupus in remission? Are you on any meds for it? I have been dx'd with Lupus which was caused by the Remicade infusions for my crohns disease. I am no longer on Remicade. I am now on Humira which can cause Lupus too. Because of this Lupus has added more joint pain to existing joint pain. I am taking 200 mg of Plaquenel and it has helped somewhat with the joints. I am wondering if your Lupus is active.

Two different crohns medications caused me to have hair loss. Could any of your medications be the culprit here? I too have problems with retaining fluid and took Lasix which was not all at the benficial in reducing the fluid after awhile. Are you taking the Lasix prn or daily? A lower dose daily is better because it it stays consistent in reducing the fluid. I currently take Bumex and the dr says its about 10 times stronger than Lasix and causes charley horses from hell. I get the charley horses in my upper thighs at night. I do take a potassium supplement and eat a banana the days I take the Bumex. I cannot take the Bumex daily it messed up my kidneys from getting too much on a daily routine.

Since you had problems with Morphine, did your dr change you to something else? I sure hope so. I hope your appt goes well on the 5th......Susie                           

Posted 5/4/2009 11:48 PM (GMT -6)
Hi Straydog,
I have been taking Plaquenel for years. Today I went to physical therapy and had a dental appt. right afterwards and my who body went into a big cramp. The dentist is so kind ( I was just there for a cleaning) that he rushed to get me checked and out of there. I rarely drive anymore and today I could barely hold the steering wheel to drive. I'm just in horrible pain with no pain meds to take right now. I see an interventional radiologist and a rheumy tomorrow and if they can't give me some answers I'm going to throw myself on their floor and cry! I was actually diag. with Lupus and Sjogren's at Mayo Clinic and maybe that's where I'll have to go again. I would certainly be worth the trip to Florida to find someone to make me feel better. I'm just praying that something good happens tomorrow. Thanks for caring.
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.

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