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Old 03-27-2013, 09:59 PM   #1711
tiggspring
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Quote:
Originally Posted by brighteyes
Hello everyone,

I have not been here for a very long time, in part because the only working computer in our house is my son's laptop.

Sorry I have been away for so long, I have had a really crappy year so far!!

We started off at Christmas with me having hives all over my body. I have had these since then. My whole body inflamed and itchy as all heck! Went to the allergist he said chronic hives. Tested negative for celiac and tested my thyroid and that came up fine.

Dr. said that it is auto-immune related and there may not be a cause that we will ever find. First doc thought I was allergic to my Lyrica, so went off all my meds. Off lyrica, off anti-depressant and off whatever I used to take for sleep.

Then early January my son was hospitalized for depression. He seems to be doing ok now, but it is so worrisome to see my ds so sad and depressed.He is in counselling more often now so hopefully he will continue to do better and better. But it is a day by day journey and struggle for him.

The day he was released, we were back in the ER because he has a kidney stone. So he is undergoing tests for that. So far, he has not had any more pain since then. He will have to have a cat scan to see if it's still there.

I have been really hoping to go to disney this summer for FD but have received no code Since I have barely worked this year I am not sure if we will be going.

It's been a crazy ride, I hope things settle down soon for us. I hope you are all doing well.

Stephanie
SOOOO glad to see you again. Codes might be later this year because of the the fantasy land.

It has been totally crazy here too for many reasons big and small. To tired to catch you all up and computer is broken so its harder to post.

You are all in my thoughts .

Especially you Carrie. Hope the surgery brought some level of good news and that you will be well soon. (((HUGS)))
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Old 03-28-2013, 10:47 PM   #1712
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Originally Posted by mommasita View Post
Oh my. I am glad you are basically ok, but sorry to hear about your retina..

I am today, but totally my fault Went out for happy hour for St. Pat's, and overdid it. I so rarely drink, that it takes me very little. Slept most of the day, and off to bed soon..

I had a weird week. Physio tells me I am ready to go back to work. Following day see my Rheumy, who is NOT onboard. He says that he is reading my testings, and can not fathom me grasping a new job with the permanent memory loss. Also Physio tells me that the insurance Dr drew up a 6 page document on me, and how was my visit with him. I never met him. So my Dr was really not impressed.... So, one says one thing, one another.
Now I am supposed to meet soon with a specialized compnay who helps you with a resume, and whatever else I assume... I will do as I am asked, and let my Dr fight it out with my insurance I guess...> these are all new experiences..

Oh, and he wants me to go for an ultrasound of my kidneys in case any stones are lying around. Specialized bloodwork to make sure they are functioning ok. And overnight EEG, as he thinks I am be suffering atypical sezures... The list is endless.

Tomorrow we start with my Dad coming over. Monday my son will be 17 Not sure how it happened, but I am glad he is having this before his Europe trip the following week.. Then Monday my Mother (MAY) come over for supper and cake...

Well, sending soft and fuzzy hugs to everyone
How frustrating to have different people telling you different things, not to mention the doctor who hasn't even seen you making a report.

I'm sorry that you have so many things going on at one time. It's got to be scary and extremely stressful to be juggling so many things.

My older DS turned 25 last Saturday. I'm not old enough to have a 25 year old child. LOL I hope that your DS has a great trip to Europe!

Quote:
Originally Posted by carrie6466 View Post
I just came on and am doing a drive by hello, as well. I'm going in on Thursday for bilateral mastectomy. It has taken them this long to finish testing and working everything out.

I see everyone has had some ups and downs since I was last on here. I hope everyone is doing ok
carrie, I am thinking of you today. My sister and niece had bilateral mastectomies and I remember being there to help them afterwards; I hope that your surgery goes as well for you as possible. Please let us know how you are doing when you are able to do so.

Quote:
Originally Posted by brighteyes View Post
Hello everyone,

I have not been here for a very long time, in part because the only working computer in our house is my son's laptop.

Sorry I have been away for so long, I have had a really crappy year so far!!

We started off at Christmas with me having hives all over my body. I have had these since then. My whole body inflamed and itchy as all heck! Went to the allergist he said chronic hives. Tested negative for celiac and tested my thyroid and that came up fine.

Dr. said that it is auto-immune related and there may not be a cause that we will ever find. First doc thought I was allergic to my Lyrica, so went off all my meds. Off lyrica, off anti-depressant and off whatever I used to take for sleep.

Then early January my son was hospitalized for depression. He seems to be doing ok now, but it is so worrisome to see my ds so sad and depressed.He is in counselling more often now so hopefully he will continue to do better and better. But it is a day by day journey and struggle for him.

The day he was released, we were back in the ER because he has a kidney stone. So he is undergoing tests for that. So far, he has not had any more pain since then. He will have to have a cat scan to see if it's still there.

I have been really hoping to go to disney this summer for FD but have received no code. Since I have barely worked this year I am not sure if we will be going.

It's been a crazy ride, I hope things settle down soon for us. I hope you are all doing well.

Stephanie
Stephanie I am so sorry to hear about your physical problems, but especially about your son. How old is he? I think that I can understand how you feel because one of my sons struggles with severe depression, severe anxiety, etc, and has been hospitalized a couple of times for it. There has been progress, but it is long and slow. If you want to talk more about it, please feel free to send me an email or PM.

Quote:
Originally Posted by mommasita View Post
I am sorry, but this is copied and pasted. I just need ANY type of positive thoughts right now if you can spare. Hugs to everyone

I have noticed a REALLY sore neck all last week, and thought I slept crooked.. I did have a few disks removed, so this can happen easily.. Then I thought, hmmm, it looks like a lump. So typical ME, I waited until Monday and went to the Neuro Hospital. Well, I had a Cat Scan, and then an MRI, and I have another CSF Leak ...

My son is leaving on his Graduation trip to Europe tomorrow for 18 days. I discussed this with the Dr, and he gave me a "pass" so to speak. I DON"t want my son to know this. On Thursday I will go in and repeat these tests, and we will take it from there.

I just can't can't can't have another surgery to fix this.. I just need some good thoughts and prayers if you are so inclined. Thank you
Oh you poor thing! I am sending all of the positive thoughts and wishes in the world. I don't know what a CSF leak is, but I will go and look it up. Anything requiring surgery is bad.




As for me, I finally went to the doctor today for my back and hip pain from when I fell 2 1/2 weeks ago, because using the heating pad, ice, staying off my feet, taking muscle relaxers, etc, wasn't helping. He sent me for x-rays and I haven't heard back yet. He did give me a prescription for hydrocodone, but I can only take that when I know I won't have to be driving, so basically I'll be taking it at night/bedtime. The pain is getting worse. He wanted me to go for physical therapy or to see a chiropractor, but the thought of any extra movement right now is not an option. I'm hoping that this is just muscle spasms, and that they will go away in time.

Last week the retina specialist said that my retina still looked good (attached) but that he saw a burst capillary in the back of my eye which is what's causing the blurriness. He said this will go away over the course of a few months, so that's good. The new floaters will always be there now though. I have to go back to him next week because they have to monitor the retina for 6-8 weeks after the PVD occurred.

Tonight my older son is having a sleep study because he has sleep apnea. I hope they can help him with a CPAP machine. Poor guy has very broken up sleep and he's always exhausted.



Gentle hugs pixie dust and lots of love sent out to all of you!
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Old 03-29-2013, 06:19 PM   #1713
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HI everyone!!

Seaspray: I hope your results are good. That sounds painful..

Well, what a week... My son is off and will return April 14th. I hear you SeaSpray. I am not sure how he turned 17, but I hope he has the experience of a lifetime..

I ended up making myself so nervous and upset my stomach big time. I did go in for my tests Thursday, and the leak is still there. We are at a watch and see plan.. On some heavy pills, because the headache is bad. The Dr is hopeful that it heals on it's own. It isn't the same as the one after surgery, that one was me rejecting my Dura patch. So basically I am lying down a lot, going stir crazy..

Hugs and thanks to everyone..XO
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Old 04-06-2013, 08:26 PM   #1714
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How is everyone doing? So many of us are going through some serious stuff right now.

All thing considered Im doing good just fighting fatigue when my kids schedules have gone a bit crazy so haven't been posting.

Hope all is going better in April, March seemed like a brutal month on the fibro thread

Sending pain free vibes pixie dust to all
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Old 04-06-2013, 10:26 PM   #1715
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Checking in..

I wish this past week never happened. But here goes.. My leak is doing Ok.. After a 6 day stomach flu, dropping 10Plus pds, I finally had my other MRI.. They think it is a small one, and healing.

NEXT: I had a sore arm/shoulder, but thinking it was typical fibro, I waited. Well, Thursday I couldn't move it, so I headed to the ER. It is bursitis with a frozen shoulder. I had an immediate cortisone shot ..Ouch.. I am on pure morphine, and an anti-inflamm.. I don't think I have slept in 5 days, I just can't get comfy.. I go back for a follow up in 2 weeks time, so see if I need to see an ortho or what..

My son is still abroad, and he called 2x.. SO happy I was to hear his voice. He is in Italy this weekend, then Paris and London, and home next Sunday.. I miss him a lot, but am resting with just one kid at home.. DH has actually helped out a lot, I guess it is that or not eat

Thinking of everyone..
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Old 04-06-2013, 11:53 PM   #1716
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Originally Posted by tiggspring View Post
How is everyone doing? So many of us are going through some serious stuff right now.
schedules have gone a bit crazy so haven't been posting.

Hope all is going better in April, March seemed like a brutal month on the fibro thread

Sending pain free vibes pixie dust to all
Yes, March was brutal! So far, April is looking much better. My pain is minimal these days, but the exhaustion/coma-sleeping is as bad as ever. It's a real effort to make myself do things. If I don't do them, then I feel bad mentally/emotionally, so I try to do at least one thing a day, before work. I'm glad that I work 6pm - midnight because it gives me a lot of opportunity to sleep/nap before work. DSs do tasks around the house such as washing dishes, putting out the garbage, carrying laundry up and down the stairs for me, and wash the floors when I ask them to. DH does what he can when he's not at work.

I'm still taking prednisone, and tapering down while the plaquenil kicks in. SO far, so good. I hope that I do as well on the plaquenil alone, once I'm totally off the prednisone.

My back has been feeling better, until today when DH and I walked around Lowe's for a while, and then did a little food shopping. I had to use the heating pad all evening tonight. At least it is improving, so that's good.

I chickened out of my retinal doctor yesterday morning. I slept very badly the night before and just was too exhausted to go through what I knew he was going to do. So, I cancelled the appt, and now I have to reschedule. Afterwards I was angry with myself for not making myself go because I worry about the retina detaching, in between appointments. My vision is not any worse, which is great, but there is still a window of a few weeks where is possible for it to still happen. I'm thinking happy little thoughts, so I think I'll be fine. LOL

Quote:
Originally Posted by mommasita View Post
Checking in..

I wish this past week never happened. But here goes.. My leak is doing Ok.. After a 6 day stomach flu, dropping 10Plus pds, I finally had my other MRI.. They think it is a small one, and healing.

NEXT: I had a sore arm/shoulder, but thinking it was typical fibro, I waited. Well, Thursday I couldn't move it, so I headed to the ER. It is bursitis with a frozen shoulder. I had an immediate cortisone shot ..Ouch.. I am on pure morphine, and an anti-inflamm.. I don't think I have slept in 5 days, I just can't get comfy.. I go back for a follow up in 2 weeks time, so see if I need to see an ortho or what..

My son is still abroad, and he called 2x.. SO happy I was to hear his voice. He is in Italy this weekend, then Paris and London, and home next Sunday.. I miss him a lot, but am resting with just one kid at home.. DH has actually helped out a lot, I guess it is that or not eat

Thinking of everyone..
You poor thing with the sore shoulder! I had that and it lasted for MONTHS. I finally just stopped using my left arm (and I'm left handed!), and let it heal, and eventually the bad pain went away, but it's still susceptible to a flair if I over use it.

I'm so glad that the MRI showed a good result and that they think the leak is healing!!!! I hope that your stomach is feeling better now. A stomach virus is no fun and can really make you feel wiped out, fast.

How fun for your DS to be traveling across Europe! I'm glad that he's having a good time.

My younger DS will be graduating from university next month. DH and I just made the last tuition payment! He will be graduating debt free! And now DH and I will have a lot more money to play with each month. Time for us to stock up our retirement accounts! We also have booked a cruise on the Disney Fantasy for May 2014.

My older DS is doing well, too. He's waiting to hear from his counselor who is supposed to be helping him find a job (he has a disability but can work in the right kind of environmet). The counselor is just waiting to speak with DSs doctors so that she can help him find the right fit for a job for him. In the meantime, he helps me a LOT around the house, drives me when my eyes are too blurry, and going to AA meetings with some friends who pick him up and bring him home. He didn't/doesn't have a bad history with drinking, but it was leading him down a path that he was smart enough to realize that he didn't want to go down, so him going to meetings helps him to keep focus on that. Also, for now, it's a good way for him to get out of the house on his own.

Well, enough rambling from me. LOL

Feel-good thoughts and pixie dust to everyone!!!
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Old 04-11-2013, 01:10 AM   #1717
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Thanks Seapray..

That will help once you lose that payment..
Lucky duck with that cruise booked. Time flies so quickly too..
Did you ever get your xray results? How is that going.

Carrie: Thinking of you

Tigg: Hope your headaches are not too bad

It is a week tomorrow, and I am like NOOOO better, and extremely frustrated. On the hospital's advice, I faxed a letter explaining to my Rheumy. I am seeing him tomorrow, and just very glad. The Er dr was ok, but I really like my own kwim?... I haven't slept more than 2 hrs at a time in over a week, so I am a little .. I sleep on the sofa, as It keeps me on my side.. Just every move kills.. Also these morphine pills kill my appetite. I find myself forgetting to eat. Add the flu I had earlier, and my son still gone (he comes back Sunday) and I have lost quite a bit. I need to remember to eat..

Well, sending love and painfree hugs to everyone.. I am counting down until Sunday..
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Old 04-12-2013, 10:30 PM   #1718
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New here! I was diagnosed with fibro in 2012 and I also have had Crohn's Disease since 2008. I started gabapentin a few months back.
I am so happy that I found this board!
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Old 04-13-2013, 12:09 AM   #1719
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New here! I was diagnosed with fibro in 2012 and I also have had Crohn's Disease since 2008. I started gabapentin a few months back.
I am so happy that I found this board!

Sorry to hear all that, but you are welcomed with open arms
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Old 04-18-2013, 03:13 PM   #1720
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Would love to hear how everyone is doing. I've been watching but waiting to post when I could remember what I wanted to ask each of you ;/ and have access to working computer. Hate writing to you all via phone cause I make mistakes

I'm feeling fibro horrible today like deadly case of flu. Been crazy busy here with daughters dance and now I'm paying..generally has been good keeping my head above water with such increase in schedule damands. Really hoping all of you who have had major struggles the last few months are on the mend. Hopefully send proper thoughtful post soon.

Sending pain free vibe and pixie dust to all.
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Old 04-19-2013, 08:03 AM   #1721
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I know several of our Fibro friends are in the Massachusetts area I think on the Boston side. Hoping all is well with you this am and that the chaos in Boston is not affecting your community.


((((HUGS)))) to anyone in the Boston area during this manhunt.
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Old 04-19-2013, 10:20 AM   #1722
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Hi everyone. Just want to say that im ok here south of boston. Scary stuff though. Im in my car outside of my doctors office right now. Been a crazy few weeks. Seems to be leveling off now. Its always something though isnt it. Lol. I will write more later. Hugs to all.
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Old 04-19-2013, 11:29 PM   #1723
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SeaSpray: So happy to hear that you are all safe..

Tigg: Hope you feel better.

I contemplated not posting, but I will.

I am just doing horrendous. Ready to almost give up..
My head is healing fine, thank goodness.. My shoulder is not healing, I NEVER sleep.. I saw my Dr again, and did more xrays. He prescripted Tramacet, and I had the worst reaction.. Home alone, dizzy, sweating, nauseous.. I ended up taking off all my clothes, lying on the bathroom floor with a cloth on my head.. I had a stupid appt with pysio, and drove there somehow... Called the Pharmacy, and my Dr faxed in Lyrica? I have taken this, it does nothing.. Pysio act like I am crazy, and how could this happen.. I have lost almost 15 pds now, I am too sore or couldn't care a fig about eating.. I look like a zombie with giant bags. Can't even wash my hair..

I am just fed up, fed up, fed up.. Seems like everyone around me is too.. My Dr thinks that because I am missing C1 and C2, and 1/2 of C3, that it may be coming from my spine. I may do an MRI for this.. Until then, I am absolutely in agony..

So sorry to complain. I just had to let it out..


Hugs everyone.
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Old 04-23-2013, 07:32 PM   #1724
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SeaSpray: So happy to hear that you are all safe..

Tigg: Hope you feel better.

I contemplated not posting, but I will.

I am just doing horrendous. Ready to almost give up..
My head is healing fine, thank goodness.. My shoulder is not healing, I NEVER sleep.. I saw my Dr again, and did more xrays. He prescripted Tramacet, and I had the worst reaction.. Home alone, dizzy, sweating, nauseous.. I ended up taking off all my clothes, lying on the bathroom floor with a cloth on my head.. I had a stupid appt with pysio, and drove there somehow... Called the Pharmacy, and my Dr faxed in Lyrica? I have taken this, it does nothing.. Pysio act like I am crazy, and how could this happen.. I have lost almost 15 pds now, I am too sore or couldn't care a fig about eating.. I look like a zombie with giant bags. Can't even wash my hair..

I am just fed up, fed up, fed up.. Seems like everyone around me is too.. My Dr thinks that because I am missing C1 and C2, and 1/2 of C3, that it may be coming from my spine. I may do an MRI for this.. Until then, I am absolutely in agony..

So sorry to complain. I just had to let it out..


Hugs everyone.
Mommasita, I am glad your head is healing but sorry to hear about your shoulder. I feel your pain. I mean I really do, I suffered with mine for years thinking it was fibro It is very painful I know. I have bursitis in one shoulder and the other is calcific tendonitis.
When mine flares I try not to use it , well you cant cause it's so painful but I just try to do gentle stretching everyday to keep it from freezing and am very careful what I do> Hope you get some relief soon for your shoulder.

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How frustrating to have different people telling you different things, not to mention the doctor who hasn't even seen you making a report.

I'm sorry that you have so many things going on at one time. It's got to be scary and extremely stressful to be juggling so many things.

My older DS turned 25 last Saturday. I'm not old enough to have a 25 year old child. LOL I hope that your DS has a great trip to Europe!



carrie, I am thinking of you today. My sister and niece had bilateral mastectomies and I remember being there to help them afterwards; I hope that your surgery goes as well for you as possible. Please let us know how you are doing when you are able to do so.


Stephanie I am so sorry to hear about your physical problems, but especially about your son. How old is he? I think that I can understand how you feel because one of my sons struggles with severe depression, severe anxiety, etc, and has been hospitalized a couple of times for it. There has been progress, but it is long and slow. If you want to talk more about it, please feel free to send me an email or PM.



Oh you poor thing! I am sending all of the positive thoughts and wishes in the world. I don't know what a CSF leak is, but I will go and look it up. Anything requiring surgery is bad.




As for me, I finally went to the doctor today for my back and hip pain from when I fell 2 1/2 weeks ago, because using the heating pad, ice, staying off my feet, taking muscle relaxers, etc, wasn't helping. He sent me for x-rays and I haven't heard back yet. He did give me a prescription for hydrocodone, but I can only take that when I know I won't have to be driving, so basically I'll be taking it at night/bedtime. The pain is getting worse. He wanted me to go for physical therapy or to see a chiropractor, but the thought of any extra movement right now is not an option. I'm hoping that this is just muscle spasms, and that they will go away in time.

Last week the retina specialist said that my retina still looked good (attached) but that he saw a burst capillary in the back of my eye which is what's causing the blurriness. He said this will go away over the course of a few months, so that's good. The new floaters will always be there now though. I have to go back to him next week because they have to monitor the retina for 6-8 weeks after the PVD occurred.

Tonight my older son is having a sleep study because he has sleep apnea. I hope they can help him with a CPAP machine. Poor guy has very broken up sleep and he's always exhausted.



Gentle hugs pixie dust and lots of love sent out to all of you!
Seaspray,

Thanks for the words about my son. He is doing better trying to get into an outpatient program at the hospital, and we are in family counselling to help us figure out how to work through this together. It is very scary, day by day. I am seeing an improvement in him though. He has been seeking out contact with his friends and I am seeing a positive change. I just hope it lasts. It is just so hard seeing our loved ones go through such pain. Congrats on your 25 year old, ha ha! Mine is 17 already!! How is your son doing lately?

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Originally Posted by mommasita View Post
Checking in..

I wish this past week never happened. But here goes.. My leak is doing Ok.. After a 6 day stomach flu, dropping 10Plus pds, I finally had my other MRI.. They think it is a small one, and healing.

NEXT: I had a sore arm/shoulder, but thinking it was typical fibro, I waited. Well, Thursday I couldn't move it, so I headed to the ER. It is bursitis with a frozen shoulder. I had an immediate cortisone shot ..Ouch.. I am on pure morphine, and an anti-inflamm.. I don't think I have slept in 5 days, I just can't get comfy.. I go back for a follow up in 2 weeks time, so see if I need to see an ortho or what..

My son is still abroad, and he called 2x.. SO happy I was to hear his voice. He is in Italy this weekend, then Paris and London, and home next Sunday.. I miss him a lot, but am resting with just one kid at home.. DH has actually helped out a lot, I guess it is that or not eat

Thinking of everyone..
Wowza! You have sooo much going on too. What the heck is in the water lately?? I am glad you heard from your son. Glad you are getting some rest. i hope things start to calm down for you soon.

Quote:
Originally Posted by mommasita View Post
Thanks Seapray..

That will help once you lose that payment..
Lucky duck with that cruise booked. Time flies so quickly too..
Did you ever get your xray results? How is that going.

Carrie: Thinking of you

Tigg: Hope your headaches are not too bad

It is a week tomorrow, and I am like NOOOO better, and extremely frustrated. On the hospital's advice, I faxed a letter explaining to my Rheumy. I am seeing him tomorrow, and just very glad. The Er dr was ok, but I really like my own kwim?... I haven't slept more than 2 hrs at a time in over a week, so I am a little .. I sleep on the sofa, as It keeps me on my side.. Just every move kills.. Also these morphine pills kill my appetite. I find myself forgetting to eat. Add the flu I had earlier, and my son still gone (he comes back Sunday) and I have lost quite a bit. I need to remember to eat..

Well, sending love and painfree hugs to everyone.. I am counting down until Sunday..
Quote:
Originally Posted by Kelli Pooh View Post
New here! I was diagnosed with fibro in 2012 and I also have had Crohn's Disease since 2008. I started gabapentin a few months back.
I am so happy that I found this board!
Welcome to the fibro board. This is a wonderful, supportive and encouraging place. We are here to listen, so vent away and share away.

Pixie dust to you all that we all start getting some relief soon.
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Old 04-23-2013, 07:50 PM   #1725
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So it sounds like everyone is going through a lot right now. I hope it gets better soon for everyone.

I am happy to update that after having hives ---- let me rephrase that ---- after almost every inch of my skin and scalp being swollen and inflammed and very painful, for almost five months I AM HIVE FREE!!! Well 99.99 % anyways.

I have been going to a naturopath and am off ALL my meds, but what was causing the problem is food. So she took me off all wheat/gluten, dairy and eggs. I am on a very strict hypoallergenic diet. She said this will also help with the fibro.

She said my body has been so inflamed for so many years and the food intolerances have just pushed my body to the breaking point. I thought I would miss the wheat cause I love my bread but I really am mourning the loss of dairy. But it is worth it cause I feel better. I still have fibro so it was not a food allergy. But I feel healthier if that makes sense.

So I guess I am almost like a vegan except I eat chicken LOL But I am feeling better and just so glad my skin is back to normal.

Wishing you all better days ahead. And pixie dust all around for everyone!

Stephanie
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