I am in so much pain...
I know I am speaking to a group who relates so I am putting it out there..there is it!
Seriously though; I am trying my very best to maintain balance, not be angry at doctors who don't get it, not look for a Rhuemmy (but I think I may have to), not act like I am the doctor..because I am NOT.
But my doctor is really confusing me and I know this is a confusing illness. However, I think one of my greatest issues may be not having a Rhuemmy who can make up her mind about
me!! I am starting back at my graduate program in the fall which I have dragged out a little bit; now I am not working for the past year. The pain is manageable now because I have a supportive husband, kids, and parents. I suppose the medication is okay...but possibly if I had a clear diagnosis..or even just a consistent message from my Rhuemmy I may be tried on a different treatment option. I believe there is something more to help me; I have not yet had severity of certain organ complications where I think I need to be in the position where I am unable to work. But I have truly have not been able to work. Even on prednisone and plaquinil I could not work. The fatigue and pain improved a little on the combination, but not too much. However, Prednisone made me almost crazy!!! I am just one of those people. I have some brain involvement and at am prone to anxiety. On prednisone I become paranoid. Thank God I had the insight to realize at times I was paranoid... it was very frightening but I am grateful to have experienced that side of fear. It grounded me in knowledge that I am actual sane!!!
I have wondered if methotrexate may be something worth trying for me. I have had a hystorectomy, no more kids. I am in so much pain and know the risks. I really need something to give me a chance to work again. My Rhummy seems to not understand or believe the level of pain I am in. However, she is quick to want to put me on disability! She will also sometimes write my DX down as Lupus and other times write it down as CTDU. If I am not on Plaquinil, I would not be able to function, literally! When I am not on it, I am in so much pain and have various symptoms I can not get out of bed to shower-let alone go to doctor for blood work to see if she can capture something in my blood work or look at the rash on my skin that keeps coming and going. Even on the plaquinil..this happens if I actually have two normal days of activity, meaning I don't sit down or rest.
I am sorry for the vent. But thanks for "listening".. I am really not sure if I am asking anything or not.... I suppose if someone reads this and relates or feels compelled to provide some feedback...than that would be great!! If not, thanks for reading!!!!! :)
CTDU/Probable SLE- (I am pretty sure I meet thee SLE criteria-have not gotten the offical DX yet) Peripheral Neuropathy, Partial Complex Seizures, Severe and chronic joint pain/fatigue, Sun sensitivity, flare brought on in sun, butterfly rash, vitamin D deficiency, skin rash in sun, Skin rashes, mouth, lip, nose sores, Hair loss, head sores, some muscle pain, Muscle cramps, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease, hx of moderate asthma, lung inflamation at onset of illness, however, no markers have ever shown up in blood, ever
Plaqunil 600mg x day, Topomax 200mg day (neuropathy), Ultram 100mg (prn) pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, lexapro 5mg, (mild anxiety),
~nothing is impossible~