Michele
#295519 - 01/07/07 01:32 PM
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Janey
Reged: 10/25/03
Posts: 1716
Loc: Maryland
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That is good news indeed about the RA. Also good news about the steroids and finally being able to wean off of them. I know you are happy about that.
I am sorry to hear about the neuropathy but at least you know now what is wrong and hopefully the Rheumy doc will be able to find something that works for you.
Sending lots of love and hugs friend,
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Janey
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Glad to hear you can at least stop the search for answers. Sometimes that's the most frustrating part....dealing with not knowing what's wrong with you.
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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no fun.. but at least you know what is wrong.. what a mess.. hrm.. wonder if the one issue is causing the other (neuropathy causing your IBS)
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Typing really aggravates my hands so sorry about not posting to everyone individually.
I had a relatively good weekend. Did my shot Friday and boy does that stuff make me sick, nausous and throwing up. I have a girlfriend who is a doctor and she brought over some, um, well, not really legal green stuff to smoke and boy it really helped me get through the night.  I didn't throw up after that and wasn't nearly as sick feeling. SO, I guess I will start doing that Friday nights after I do my shot!  
I have been on the heavy duty mega dose of vitamins and started the lycria as well and Saturday, I felt relatively well. I mean the usual places still hurt and I was dizzy and would almost pass out if I stood up too quick and the shakes are still really bad but overall, not bad. I spent about 3 hours cleaning house but didn't get to taking down the x-mas decorations, so they will stay up another week. But, my bathroom was pretty gross so I hosed it down, actually got naked, climbed in the shower with a bucket of cleaner and went to town!! Well, I realized the bath matt was moldy so I throw it out.
I put some jeans on and headed out to buy a new bath matt. I drove by this hardware store by my house that is closing to see what was on sale. No bath matts but they had Dyson vacuums on sale, they never go on sale! I have wanted one for years, so, I flagged down a cute little boy working and asked him to carry it out for me! Had to put it on the credit card but oh well. Its the purple one, the top of the line with all the gadettes and gizmos!! 
Still needed a bath matt, so off to Target, boy was it busy! Got caught up in trying some cloths on, got some really comfy yoga pants and long sleeve t-shirt, some panties and tank tops, a new book, blah, blah, blah, bunch of stuff I really didn't have to have. Stood 20 minutes in check out, walk 2 miles to the car and realize DUH, I didn't buy the darn bath matt!  Crap, walk back into the store and 20 minutes later back at the car with the bath matt and a bag of cookies!
Got home and took a nice hot bubble bath. My tub is little so it wasn't as relaxing as I was hoping but my little Oliver sat next to the tub licking the bubbles and looking so darn cute. I would have dropped him in with me except we were expecting company for dinner in like 20 minutes!
My girlfriend and her boyfriend came over and Will cooked a great turkey roast and baked potatoes and steamed green beans, yummy! We just hung out for a bit and socialized. It was nice to feel well enough to entertain.
I know I over did it as Sunday I slept most of the day! I hurt but not as bad as usual, even after doing all that on Saturday! Today, I am a bit tired and my hand is screaming but otherwise everything is a dull roar instead of a SCREAM. I noticed my ankles are very swollen but the rheumy said that might happen with the lycria and it should pass in a week or so.
Mentally, I feel a lot better. I was feeling really suicidal there for a few weeks but now, I feel a bit renewed. I'm going to give it a few weeks and do some research. I don't know if I will wait the 6 weeks until I see the rheumy again before I make an appt with a neurologist or do it on my own. She never mentioned seeing one but if I do have neuropathy, I think that's who I need to see. Maybe Ill give the vitamins and lycria the 6 weeks and go from there. I'm still a bit overwhelmed with all the doctors and medical stuff so as long as I don't get any worse, I may just wait. I think I just need to chill, see what happens, recharge my batteries so to speak. While I was driving around Saturday, I was actually singing along with the radio! I am trying to stay positive and not let myself get so down as before. I realize this isn't going to be easy to battle but I think I will be ready for the fight soon. 
Thank you so much for every ones continued support through all this, it really has met the world to me! Love and hugs to all.
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Taking it one day at a time.....
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I was interested to read your post and to hear what the doctor has diagnosed because I am experiencing some of the same symptoms. Since my foot surgery 3 months ago, I've had increased pain in both feet (a hot, burning pain, even when I'm sitting). The orthopedic surgeon is sending me to see a neurologist on Wednesday=----and one of the things he will be checking for is neuropathy.
I'm curious as to how the doctor came up with this diagnosis for you. Did you undergo nerve conduction tests? I have had some of those with a different doctor, but from what I understand, the neurologist will be able to do more extensive nerve testing.
The orthopedic surgeon who did my foot surgery had me try Lyrica (3 times a day) this summer---before the surgery---to confirm that I did indeed have a nerve problem. The Lyrica did help tremendously (that was the first time in years that I had walked without a lot of pain), but it made me so drowsy---and I gained about 20 pounds in the 5 weeks I took it! I was so starving that I would eat a sandwich and make me another one! The doctor told me I could not take the medicine long term. I gradually weaned myself off of it (reducing the dosage to twice a day for a week and then once a day for a week, then every other day), and I still experienced some ugly withdrawal symptoms when I finally got off of it. (I felt like I had the flu, was nauseous and achey, and had bad insomnia for about 2 weeks). That finally got better! Of course, the doctor didn't want to attribute that to me stopping the medicine, but I know it was (the nurse told me the drug rep said it could do that.)
Hopefully, it will help you with the pain and swelling. I know it did me! It's got to be better than taking the steroids. I'm glad you finally have a diagnosis. Maybe now you can get some relief.
I am interested to see what this neurologist says on Wednesday about medications for nerve pain. My main concern is that I cannot afford to take anything that will cause me to gain any more weight! Right now, I take a very small dose of Elavil (one of the old anti-depressants), on a as-needed basis only, at night, when the nerve pain gets too bad. Lately, it hasn't seemed to help at all!
Good luck!
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I have not had any of the nerve tests done yet. I think she is basing it on my history of the reflex sympathetic dystrophy and my symptoms. I have the hot burning sensations that you mentioned. I shake uncontrollably, I am very heat sensitive, like I cant sweat and turn beat red and feel like I am suffocating-and I am not talking extreme heat, like if my boss turns the heat up to 70 in the office, I think I will die!! I can't stand to wear socks, they hurt my legs, even shaving hurts. My skin is way more sensitive than it ever was. I have all this visible swelling yet my lab works shows no active inflammation. Apparently the only thing that would cause that is neuropathy. I am sensitive to light and sound and touch and my outside fingers sometimes go numb. I can't stand any sort of pressure anywhere. I have to roll over every 20 minutes and can only sit in the same position for like ten minutes. The pressure of clothes is intolerable and shoes, even headbands! I am very dizzy all the time and my vision is odd, its like everything pulsates. I am always short of breath. I have trouble going pee and sometimes leak a bit when I cough or sneeze or something. The list goes on and on.
Please update me on what your neurologist says Wednesday. I just started the lycria and I don't seem to have the munchies from it but I am also decreasing my steroids. The rheumy talked about switching my zoloft to the cymbalta at my next appt as well. I may have to have some spinal blocks for the pain and swelling in my hands.
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Taking it one day at a time.....
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Hey Michele; after just reading what you did over the weekend;tired me out!!! But really you sounded like a super woman! Glad to hear that you may know what is really happening to you and to great results would be good!! Hoping today you are not worn out and you have a good week! Reading a post up the page, did you read anymore on MS. and get any answers. Possibly your Dr. can fill you in on that?! Take care, and I will keep reading your responses of your updates and keep you in my prayers everyday!! You have been through so much but your upbeat attitude does keep us going day today!! luv Sue ps I know that green stuff makes the world a better place sometimes, oh and it can be for medicinal purposes
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You know, I feel BETTER!!!!!!!!!!!!!! Not great, not pain free but definitely a big improvement. My ankles swelled from the lycria but the rheumy warned me of that. My lovely hubby rubbed them last night very gently to get some of the fluid broken up and they are still puffy but don't hurt as much right now, we will see what happens by the time I get off work.
My hands are still puffy but I would say the swelling is down 30% and the pain is probably about half of what it was. A normal person might say they feel bad but for me, its all relative! I was actually singing in the car to the radio again this morning!!
And, I haven't had D in three days!!!!!! In fact, I have had normal, regular people poops! I don't know if its the boat load of calcium or the lycria or just what but I'll take it!!!! I read yesterday the neuropathy can affect the gi tract so maybe we are on to something. The lycria is still making me a bit dizzy but they say that should pass.
Its been a while since Ive been friends with the green stuff but boy, it sure does take away the nausea like nothing else. I have tried phenergan (sp?) and zofran and still puke for hours after my mtx injection. After a little stink weed, I stopped barfing almost immediately!! So, I guess I will just get that out when I draw up my shots on Friday night! Id rather spend Friday night going DURRRR from being high than puking my guts out from the chemo drug!
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Taking it one day at a time.....
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Re: Thanks everyone
#295766 - 01/09/07 01:30 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Michele, I'm happy to hear the "herb" is working for you. I have never tried it myself, but if it works, all the power to you! I'm glad you had a good day on Saturday, even if you did overdo it. If anyone deserves a good day, it's you!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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It's so good to hear that you're feeling better and having some success with your health issues. I'm glad the green stuff works! That must be such a relief knowing there's something that will actually help the side effects from the chemo drug. And Whoohoooo!!! on no D for three days! That's fantastic. I understand the joy of normal poops!
I didn't know neuropathy can affect the gi tract; I've mentioned before I've had some problems with a burning pain in my hands, feet, and tongue, but thankfully it hasn't gotten any worse and I haven't had D in months. Are you going to see about getting an MRI? A friend's husband was recently diagnosed with MS, but I don't know too much about it.
Big hugs!
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