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Doubting Myself
I don't know if I can function with Behcet's Disease and no pain meds. Day 10 has been a very trying day. What does one do for pain and fatigue without opiates?
well i am on suboxone maintenance, but it doesnt do much for my pain, thats why i am checking into neurontin. hot baths work some and getting my legs up...but nothing really significant works YET!
i am still working on this...
it feels like my bones from my hips to my heels are on fire, and it last anywhere from 4-10 days...i dont even know what triggers it yet, i may never know....it all sucks!!
i am still working on this...
it feels like my bones from my hips to my heels are on fire, and it last anywhere from 4-10 days...i dont even know what triggers it yet, i may never know....it all sucks!!
Yup, elevated white blood count everytime. My body is at war with itself and now my mind is as well.
How do you deal with the pain during flares? I don't know a lot about fibro, but I've heard it's really painful :(
Oh boy, do I know what you mean. One rheumatologist told me that I wasn't from Rhwanda, so I couldn't possibly have behcet's...lol..Needless to say I never went back to him.I also have a lot of friends and family that never understood how I could have SO many symptoms. I think they thought I was a hypochondriac.
I just got over a bout of the mouth sores, and they are NO fun. I ate jello, and broth and that was it. And like you said, even water burned.
My knees and ankles are swollen bad, too. Mostly on my right side though. The same side as my stroke.
Did you have a continous high wbc, too? That's how my doctor measures my flares now. That, and sed. rate.
I just got over a bout of the mouth sores, and they are NO fun. I ate jello, and broth and that was it. And like you said, even water burned.
My knees and ankles are swollen bad, too. Mostly on my right side though. The same side as my stroke.
Did you have a continous high wbc, too? That's how my doctor measures my flares now. That, and sed. rate.
well i am glad you 2 found each other, support from someone who has been there is so very important! stay in contact with each other for knowledge and support.
i have fibromyalgia, so i understand how the flare ups are (although no clue the severity of yours, not trying to compare here) mine can be debilitating at times also, along with other multiple symptoms, i am very lucky to have a supportive husband...so far, although who knows he could get sick of dealing with it tomorrow...
i wish both of you all the best and hope you find what will help and work for you, i too am still working on that myself...GL!!!
i have fibromyalgia, so i understand how the flare ups are (although no clue the severity of yours, not trying to compare here) mine can be debilitating at times also, along with other multiple symptoms, i am very lucky to have a supportive husband...so far, although who knows he could get sick of dealing with it tomorrow...
i wish both of you all the best and hope you find what will help and work for you, i too am still working on that myself...GL!!!
He just keeps telling me to take a walk, suck it up, drive on, his way of handling things. I have taken walks but honestly I think it made me worse or at least more tired. Now I have new sores starting in my mouth and my kness and ankles are swollen. And it took me two very pro-active years for me to get diagnosed and I still have doubters occasionally because I am Irish/German/Cherokee. I think it's from the Portugese that lived with the Cherokee. It's more prominent there. Can you tell I've done a lot of research into this?
Well, my docs all *think* it's behcet's. I'm 2 years into the path to diagnosis. My rheumatologist says he's 90 precent sure that's what it is.
And yep..I know exactly how she feels. I've had some dark, rough patches with this disease. It makes you feel so helpless and useless.My husband used to respond the same way as Lar's. Then one day my doctor sat him down and explained everything to him.He told him he'd be no help to me if he couldn't fully support me, especially in my depression. I even tried to leave my husband, because I felt so guilty, and wanted him to be able to lead a normal life. Like I said..dark times.I feel so bad for Lar right now *sigh*
Lar, please try talking to him.Or write him a letter?
And yep..I know exactly how she feels. I've had some dark, rough patches with this disease. It makes you feel so helpless and useless.My husband used to respond the same way as Lar's. Then one day my doctor sat him down and explained everything to him.He told him he'd be no help to me if he couldn't fully support me, especially in my depression. I even tried to leave my husband, because I felt so guilty, and wanted him to be able to lead a normal life. Like I said..dark times.I feel so bad for Lar right now *sigh*
Lar, please try talking to him.Or write him a letter?
you have Behcets also? wow, i am sorry, but am happy you 2 can help each other out, a great support system for the both of you.
I've been doing this for nine years. I have tried remicade, enbrel, methotrexate, ridaura, and about ten others I can't remember. My body has rejected them all. I tried acupuncture and my skin pushed the needles right out of me. I've asked for thalidomide; everyone is scared of it. So it's prednisone for flares. I vary between 116 pounds and 150 on a regular basis. I can't eat when I have mouth sores, and even drinking water hurts. Now the arthritis has gotten real bad and I've started having palsy-like tremors.
So I guess that's why I am beginning to wonder if I should be off the opiates even though I want to be.
So I guess that's why I am beginning to wonder if I should be off the opiates even though I want to be.
I have read about behcets it is very painful .I feel for you . There had to have been a part of you that thought you could do this . Take it day by day .I would dicuss other options with the doctor .
Try sitting down with hubby and tell him how you feel ..
avis
Try sitting down with hubby and tell him how you feel ..
avis
My first outbreak started after a bad case of strep throat. My doc thinks that triggered the disease.
Because it's so rare, I can't tell you the problems we went through trying to figure out what the heck was wrong with me.
Lar-do you watch the show mystery diagnosis? There was a woman named Joanne that was on and she described her whole story. It took her over 10 years to get diagnosed. She now runs the US Behcet's disease association.I've emailed with her..if you like I can send you the link to her? She's AWESOME.
Because it's so rare, I can't tell you the problems we went through trying to figure out what the heck was wrong with me.
Lar-do you watch the show mystery diagnosis? There was a woman named Joanne that was on and she described her whole story. It took her over 10 years to get diagnosed. She now runs the US Behcet's disease association.I've emailed with her..if you like I can send you the link to her? She's AWESOME.
Wow hun...this sounds like it could be serious... you have been clean for 10 days? and other then any nasty withdrawals you may be feeling, how is your pain level? i guess for advice i would ask your doctor if there may be any alternative for pain that is non-addictive. i have heard that neurontin is helpful with nerve pain, but again of course talk with your doctor.
what symptoms do YOU have?
what symptoms do YOU have?
Behcet's is an autoimmine disorder that involves the blood vessels throughout the body, but it causes horrible symptoms such as genital, mouth sores, joint pain, occular involvement, CNS problems.It saps your energy, and with flare ups there is usually a LOT of pain.
Lar- I used to be on prexige (cox2), but it was recalled by Helath Canada because it can cause liver damage. My Rheum switched me to diclofenac, and prednisone. It helps, but I'm having a bad flare right now, so my doc may try me on thalomide (sp?).
We're also looking into the imminosuppressive drugs that treat MS.
I was treated with low dose chemo a year ago, but it didn't help at all.
Are you on any of the imminosuppressive drugs? Has your rheumatoligist gone over any of these with you?
Lar- I used to be on prexige (cox2), but it was recalled by Helath Canada because it can cause liver damage. My Rheum switched me to diclofenac, and prednisone. It helps, but I'm having a bad flare right now, so my doc may try me on thalomide (sp?).
We're also looking into the imminosuppressive drugs that treat MS.
I was treated with low dose chemo a year ago, but it didn't help at all.
Are you on any of the imminosuppressive drugs? Has your rheumatoligist gone over any of these with you?
Partly, he is so resentful of me right now and I can help more when on meds. But I don't want to take them anymore.
Pasting:
What is Behcet's Disease?
Behcet's disease is a rare, chronic inflammatory disorder. The cause of Behcet's disease is unknown, although there have been reports of a virus found in some individuals with the disease. Behcet's disease generally begins when individuals are in their 20s or 30s, although it can happen at any age. It tends to occur more often in men than in women. Symptoms of Behcet's disease include recurrent ulcers in the mouth (resembling canker sores) and on the genitals, and eye inflammation. The disorder may also cause various types of skin lesions, arthritis, bowel inflammation, meningitis (inflammation of the membranes of the brain and spinal cord), and cranial nerve palsies. Behcet's is a multi-system disease; it may involve all organs and affect the central nervous system, causing memory loss and impaired speech, balance, and movement.
The effects of the disease may include blindness, stroke, swelling of the spinal cord, and intestinal complications. The disease is common in Japan, Turkey and Israel, and less common in the United States.
Is there any treatment?
Treatment for Behcet's disease is symptomatic and supportive. Medication may be prescribed to reduce inflammation and/or regulate the immune system. Immunosuppressive therapy may be considered.
What is the prognosis?
Behcet's disease is a lifelong disorder that comes and goes. Permanent remission of symptoms has not been reported.
What is Behcet's Disease?
Behcet's disease is a rare, chronic inflammatory disorder. The cause of Behcet's disease is unknown, although there have been reports of a virus found in some individuals with the disease. Behcet's disease generally begins when individuals are in their 20s or 30s, although it can happen at any age. It tends to occur more often in men than in women. Symptoms of Behcet's disease include recurrent ulcers in the mouth (resembling canker sores) and on the genitals, and eye inflammation. The disorder may also cause various types of skin lesions, arthritis, bowel inflammation, meningitis (inflammation of the membranes of the brain and spinal cord), and cranial nerve palsies. Behcet's is a multi-system disease; it may involve all organs and affect the central nervous system, causing memory loss and impaired speech, balance, and movement.
The effects of the disease may include blindness, stroke, swelling of the spinal cord, and intestinal complications. The disease is common in Japan, Turkey and Israel, and less common in the United States.
Is there any treatment?
Treatment for Behcet's disease is symptomatic and supportive. Medication may be prescribed to reduce inflammation and/or regulate the immune system. Immunosuppressive therapy may be considered.
What is the prognosis?
Behcet's disease is a lifelong disorder that comes and goes. Permanent remission of symptoms has not been reported.
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