Re: Feeling Terrible

[Guest guest]

, I'm sorry that you are having such a bad flare. You must feel disappointed & disheartened, along with the pain. Is this your first visit to Hopkins? Have you had any sarc treatment besides the Prednisone? You'll probably need a combination of meds to get things back under control. Meanwhile, do you have a primary care provider who might order some Fentanyl patches or lollipops for breakthrough pain?

And, as always, hydrate, hydrate, hydrate! Have you tried the MSM? Many folks have found it very helpful for joint & bone pain.

When you go to JH, be sure to take someone with you to make sure that your questions & concerns are all covered, and to advocate for you.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Feeling TerribleDate: Sun, 26 Aug 2007 21:02:55 -0000

Hi there. I first of all want to thank those of you lending support onthis website while feeling terrible. It is so meaningful for me tohave a place to write where I know others have gone through similarfeelings. I am sorry for those of you suffering and I ampraying/thinking of you.I am having a really hard time. I am waiting until next week to beseen at s Hopkins by a sarcoid and then a neurosarcoid doctor. Iam thankful to have them. I was doing well on treatment but now amnot. I was just on 4o mg. prednisone plus lyrica. I was getting readyto go back to work but started getting this exhaustion so bad suddenlyI couldn't get out of bed. Then the pain came back but worse. Myjoints deeply ache. I get this terrible crying out pain in my arms andlegs and a deep bone like pain. Plus I am literally going out of mymind just feeling so bad. I was in the hospital and some tests showedit is now in my lungs and it is growing/spreading in mypituitary/hypothalamus. Before they could do more tests though, myinsurance kicked me out. I am on oxycodone/oxycontin for pain and Ihate what it does to my memory plus it doesn't help my pain enough. Iam 31 years old and I do not want to die, but I feel so bad it feelslike I am dying. I have a wonderful and supportive husband and I am sothankful for that. I am just afraid though and know I will need lotsmore tests again. The prednisone is odviously not working and I hateto wait. Locally, they said I can go back to the hospital for paincontrol but I would rayher be at home. Some words of encouragementwould be appreciated now. Thank you for your courage in giving othershope when you are feeling so bad.

A new home for Mom, no cleanup required. All starts here.

[Guest guest]

, I'm sorry that you are having such a bad flare. You must feel disappointed & disheartened, along with the pain. Is this your first visit to Hopkins? Have you had any sarc treatment besides the Prednisone? You'll probably need a combination of meds to get things back under control. Meanwhile, do you have a primary care provider who might order some Fentanyl patches or lollipops for breakthrough pain?

And, as always, hydrate, hydrate, hydrate! Have you tried the MSM? Many folks have found it very helpful for joint & bone pain.

When you go to JH, be sure to take someone with you to make sure that your questions & concerns are all covered, and to advocate for you.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Feeling TerribleDate: Sun, 26 Aug 2007 21:02:55 -0000

Hi there. I first of all want to thank those of you lending support onthis website while feeling terrible. It is so meaningful for me tohave a place to write where I know others have gone through similarfeelings. I am sorry for those of you suffering and I ampraying/thinking of you.I am having a really hard time. I am waiting until next week to beseen at s Hopkins by a sarcoid and then a neurosarcoid doctor. Iam thankful to have them. I was doing well on treatment but now amnot. I was just on 4o mg. prednisone plus lyrica. I was getting readyto go back to work but started getting this exhaustion so bad suddenlyI couldn't get out of bed. Then the pain came back but worse. Myjoints deeply ache. I get this terrible crying out pain in my arms andlegs and a deep bone like pain. Plus I am literally going out of mymind just feeling so bad. I was in the hospital and some tests showedit is now in my lungs and it is growing/spreading in mypituitary/hypothalamus. Before they could do more tests though, myinsurance kicked me out. I am on oxycodone/oxycontin for pain and Ihate what it does to my memory plus it doesn't help my pain enough. Iam 31 years old and I do not want to die, but I feel so bad it feelslike I am dying. I have a wonderful and supportive husband and I am sothankful for that. I am just afraid though and know I will need lotsmore tests again. The prednisone is odviously not working and I hateto wait. Locally, they said I can go back to the hospital for paincontrol but I would rayher be at home. Some words of encouragementwould be appreciated now. Thank you for your courage in giving othershope when you are feeling so bad.

A new home for Mom, no cleanup required. All starts here.

[Guest guest]

Hi ,When I read your post about the pain and exhaustion, it sounded just like me. My arms and left leg/foot are the worst and the vicodin ES barely makes a dent when it's really bad. It does feel like a deep bone type pain...hard to describe. My next appt at s Hopkins is the first week of October. JH is a great place and I'm glad that you're going there. My first appt was Nov 2005. You are in my prayers too. We will make it through this.Blessings,Beckyelizabethecowell wrote: Hi there. I first of all want to thank

those of you lending support on this website while feeling terrible. It is so meaningful for me to have a place to write where I know others have gone through similar feelings. I am sorry for those of you suffering and I am praying/thinking of you. I am having a really hard time. I am waiting until next week to be seen at s Hopkins by a sarcoid and then a neurosarcoid doctor. I am thankful to have them. I was doing well on treatment but now am not. I was just on 4o mg. prednisone plus lyrica. I was getting ready to go back to work but started getting this exhaustion so bad suddenly I couldn't get out of bed. Then the pain came back but worse. My joints deeply ache. I get this terrible crying out pain in my arms and legs and a deep bone like pain. Plus I am literally going out of my mind just feeling so bad. I was in the hospital and some tests showed it is now in my lungs and it is growing/spreading in

my pituitary/hypothalamus. Before they could do more tests though, my insurance kicked me out. I am on oxycodone/oxycontin for pain and I hate what it does to my memory plus it doesn't help my pain enough. I am 31 years old and I do not want to die, but I feel so bad it feels like I am dying. I have a wonderful and supportive husband and I am so thankful for that. I am just afraid though and know I will need lots more tests again. The prednisone is odviously not working and I hate to wait. Locally, they said I can go back to the hospital for pain control but I would rayher be at home. Some words of encouragement would be appreciated now. Thank you for your courage in giving others hope when you are feeling so bad.

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

[Guest guest]

Hi ,When I read your post about the pain and exhaustion, it sounded just like me. My arms and left leg/foot are the worst and the vicodin ES barely makes a dent when it's really bad. It does feel like a deep bone type pain...hard to describe. My next appt at s Hopkins is the first week of October. JH is a great place and I'm glad that you're going there. My first appt was Nov 2005. You are in my prayers too. We will make it through this.Blessings,Beckyelizabethecowell wrote: Hi there. I first of all want to thank

those of you lending support on this website while feeling terrible. It is so meaningful for me to have a place to write where I know others have gone through similar feelings. I am sorry for those of you suffering and I am praying/thinking of you. I am having a really hard time. I am waiting until next week to be seen at s Hopkins by a sarcoid and then a neurosarcoid doctor. I am thankful to have them. I was doing well on treatment but now am not. I was just on 4o mg. prednisone plus lyrica. I was getting ready to go back to work but started getting this exhaustion so bad suddenly I couldn't get out of bed. Then the pain came back but worse. My joints deeply ache. I get this terrible crying out pain in my arms and legs and a deep bone like pain. Plus I am literally going out of my mind just feeling so bad. I was in the hospital and some tests showed it is now in my lungs and it is growing/spreading in

my pituitary/hypothalamus. Before they could do more tests though, my insurance kicked me out. I am on oxycodone/oxycontin for pain and I hate what it does to my memory plus it doesn't help my pain enough. I am 31 years old and I do not want to die, but I feel so bad it feels like I am dying. I have a wonderful and supportive husband and I am so thankful for that. I am just afraid though and know I will need lots more tests again. The prednisone is odviously not working and I hate to wait. Locally, they said I can go back to the hospital for pain control but I would rayher be at home. Some words of encouragement would be appreciated now. Thank you for your courage in giving others hope when you are feeling so bad.

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.