Aa
Don't belong anywhere
I do not have any dx of any kind. Doc's have flirted with Lupus & MS. I think I was give an ELISA at one time for Lyme. I was told by my 1st rheumy that I had pre-lupus 12/08. She tested me for tender points. I didn't have any.
Start at the beginning:
I thought my neuro problems might have been caused by my vitamin defs (from severe IBS) so I brought it up to the GI. He mentioned neuropathy & MS & sent me to a neuro May 07'. This was way before my leg pain started. Most of my neuro problems at the time were in my face. She (the neuro) said she thought it was MS & I was sent for a MRI. When it came back ok, she did a nerve conduction study with the needles. I did not want to have it done because I knew it was going to be painful & thought it would a waste of my time & theirs. When I went to get my MRI results, they made me do it. That was so painful!!! 12, 1 inch needles up & down my left leg & hip. That test was ok too. I don't know why she even did it. The only nerve problems I had at the time were in my left hip because of a possible birth defect (my femoral head is flat & the ortho don't know why). After all this, she tells me it's arthritis. I already knew this.
Now my skin hurts. My skin has really hurt for the past couple of weeks. Now my clothes touching my skin hurts. It usually feels like a sunburn. Lately it feels like my skin is bruised. Just my upper thighs & upper arms. It's hurts for my dachshunds to walk on me but once they stay still, I'm fine, kinda. Feel alot like the pain I get in my face that I call "slapped face." Starts with eye pain, left or right. My vision in that eye gets wavy vertical lines in it. Hurts to move my eye or blink. Keeping them closed is the only option, if possible. I get a massive migraine & feel like I am going to die. Then my face hurts on the side that my eye hurts. It only covers a quarter or so of my face. Cold is like ice. Heat is like fire. Like I have been slapped & the sensation stayed. This feeling lasts for a few days even though the eye pain only last 12 or so hours with the migraine. This feeling has moved down to my shoulder & lower back. This used to happen every 3-6 months. Although my face hasn't done this in a while, my legs & arms feel this often. I had some kind of virus in July I guess. The skin on my ear & neck really hurt like like "slapped face." What is this? It's not in my head!
I've got bad pain in my legs. I've tried every pain killer. Nothing helps. It started mid-November 07'. The 1st experience was like electrical shocks in my left leg. It didn't matter if I rested or got up & moved around. The shocks even went to my thigh that 1st day. The pain has never gone away. It is worse sometimes then others. It
doesn't matter how active or how lazy I am. Since my left femur head is flat, I have alot of nerve problems in that leg. I thought this was part of that. Then my right leg started doing the same thing. I tired to describe it as shin splints but on the sides. Like my ligaments hurt. Nothing really takes away the pain. The 1st rheumy, that I fired, said I just wasn't active enough & that's why I had so much pain in my legs. Mind you this was after I told her that I had to drop down to 3 days a week on my feet at work instead of 6 days. She also said my right shoulder pain was from endo, lol. Didn't know my shoulder could have a period even when I wasn't. The FNP put me on Requip which didn't help & gave me terrible nightmares. It also kept me up all night so I had to take Trazadone, a sleep aid. Then she put me on Neuronitin which did help some but I kept having to up the dose which wasn't a good option. Lately I've been getting those electrical shocks in my right shoulder.
Don't know where to go from here. I was in a wreck 9/26/08 & I have been much worse ever since. If I miss a dose of Ultram ER 200mg, I can not get out of the bed the next day. Also parts of the bottom of my feet go numb then tingle like they've been asleep. Small areas like the size of a quarter. For no reason at all as far as circulation goes. Also the 3 middle toes on both of my feet will go numb. The ortho said it might be Morton's Neuromas. He didn't perform any tests for this. He kinda just guessed that this is what it was. I just saw a book online about Peripheral Neuropathy & it's titled "Numb toes & dealing with Peripheral Neuropathy." I think I got that title right. This is what sparked my memory of these sensations I also get. Also, I don't know if it was a lyme rash but, I had one that looked a heck of a lot like one April 07'. I thought it was a ring worm because it was round. It didn't itch though & my son had a ring worm a really long time ago & he scratched it to death. It was about the size of my fist. I asked the 85yr pharmacist that eats at my mom's restaurant what he thought it was & he said it wasn't a ring worm but didn't know what it was. This was before I knew anything about lyme. It was after this that I got 3 more weird rashes & when the unexplained joint pain began. This one stayed about a month. I also got an extremely itchy purple rash at the same time that lasted a month. I had the "slapped face" way before that ring rash. I was on Cymbalta from May 07'-Nov. 08'. My symptoms only got worse on it. I also tried Lyrica for a few weeks with no improvement.
Another weird thing has happened twice now. I'm used to weird things but this was really weird. The 1st time it happened, I got out of my Suburban & walked to the back. Then I just started peeing! I could stop the flow but as soon as I let go, I started peeing again! I didn't even have to go! I have a fallen bladder & have to go all the time. But this time, no, I didn't even have the sensation or feeling of fullness. Crazy! I'm only 31! Too soon to wear supports!!! Guess I'd rather lose my pee instead of poo, lol. I am pretty sure that one of the NP ran an ELISA on me. I came in with my normal flu like symptoms & stiff neck with no sinus stuff. At this point I think I'm going to straight up ask for the Western blot. I know there are better tests but I figure it's the only one that the office will run on me. I feel like it's probably lyme but it may be Fibro. My new rheumy tested me for Lupus, negative. Now he's testing me for RA. I guess if it's negative he'll check me for tender points. I have fatigue everyday ranging from tired to lathargic. I don't have muscle pain though. I did in my neck & shoulders after the wreck but I went to PT for 2 months & it cleared up mostly. Something has got to give. When I feel good (not very often) I don't care about a dx. When I feel like poop, it's all I can think about. Like my whole life is summed up in a dx. I spent an hour on the phone yesterday crying to my friend telling her how worthless I feel. It's been 5 months since the wreck. I've basically slept away 5 months of my life. This is not why God put me here. Something has got to give. Thanks anyone that read this. I know it's long. I'm just desperate to get my life back to normal, whatever that feels like. It's been so long, I don't know.
Jen
Start at the beginning:
I thought my neuro problems might have been caused by my vitamin defs (from severe IBS) so I brought it up to the GI. He mentioned neuropathy & MS & sent me to a neuro May 07'. This was way before my leg pain started. Most of my neuro problems at the time were in my face. She (the neuro) said she thought it was MS & I was sent for a MRI. When it came back ok, she did a nerve conduction study with the needles. I did not want to have it done because I knew it was going to be painful & thought it would a waste of my time & theirs. When I went to get my MRI results, they made me do it. That was so painful!!! 12, 1 inch needles up & down my left leg & hip. That test was ok too. I don't know why she even did it. The only nerve problems I had at the time were in my left hip because of a possible birth defect (my femoral head is flat & the ortho don't know why). After all this, she tells me it's arthritis. I already knew this.
Now my skin hurts. My skin has really hurt for the past couple of weeks. Now my clothes touching my skin hurts. It usually feels like a sunburn. Lately it feels like my skin is bruised. Just my upper thighs & upper arms. It's hurts for my dachshunds to walk on me but once they stay still, I'm fine, kinda. Feel alot like the pain I get in my face that I call "slapped face." Starts with eye pain, left or right. My vision in that eye gets wavy vertical lines in it. Hurts to move my eye or blink. Keeping them closed is the only option, if possible. I get a massive migraine & feel like I am going to die. Then my face hurts on the side that my eye hurts. It only covers a quarter or so of my face. Cold is like ice. Heat is like fire. Like I have been slapped & the sensation stayed. This feeling lasts for a few days even though the eye pain only last 12 or so hours with the migraine. This feeling has moved down to my shoulder & lower back. This used to happen every 3-6 months. Although my face hasn't done this in a while, my legs & arms feel this often. I had some kind of virus in July I guess. The skin on my ear & neck really hurt like like "slapped face." What is this? It's not in my head!
I've got bad pain in my legs. I've tried every pain killer. Nothing helps. It started mid-November 07'. The 1st experience was like electrical shocks in my left leg. It didn't matter if I rested or got up & moved around. The shocks even went to my thigh that 1st day. The pain has never gone away. It is worse sometimes then others. It
doesn't matter how active or how lazy I am. Since my left femur head is flat, I have alot of nerve problems in that leg. I thought this was part of that. Then my right leg started doing the same thing. I tired to describe it as shin splints but on the sides. Like my ligaments hurt. Nothing really takes away the pain. The 1st rheumy, that I fired, said I just wasn't active enough & that's why I had so much pain in my legs. Mind you this was after I told her that I had to drop down to 3 days a week on my feet at work instead of 6 days. She also said my right shoulder pain was from endo, lol. Didn't know my shoulder could have a period even when I wasn't. The FNP put me on Requip which didn't help & gave me terrible nightmares. It also kept me up all night so I had to take Trazadone, a sleep aid. Then she put me on Neuronitin which did help some but I kept having to up the dose which wasn't a good option. Lately I've been getting those electrical shocks in my right shoulder.
Don't know where to go from here. I was in a wreck 9/26/08 & I have been much worse ever since. If I miss a dose of Ultram ER 200mg, I can not get out of the bed the next day. Also parts of the bottom of my feet go numb then tingle like they've been asleep. Small areas like the size of a quarter. For no reason at all as far as circulation goes. Also the 3 middle toes on both of my feet will go numb. The ortho said it might be Morton's Neuromas. He didn't perform any tests for this. He kinda just guessed that this is what it was. I just saw a book online about Peripheral Neuropathy & it's titled "Numb toes & dealing with Peripheral Neuropathy." I think I got that title right. This is what sparked my memory of these sensations I also get. Also, I don't know if it was a lyme rash but, I had one that looked a heck of a lot like one April 07'. I thought it was a ring worm because it was round. It didn't itch though & my son had a ring worm a really long time ago & he scratched it to death. It was about the size of my fist. I asked the 85yr pharmacist that eats at my mom's restaurant what he thought it was & he said it wasn't a ring worm but didn't know what it was. This was before I knew anything about lyme. It was after this that I got 3 more weird rashes & when the unexplained joint pain began. This one stayed about a month. I also got an extremely itchy purple rash at the same time that lasted a month. I had the "slapped face" way before that ring rash. I was on Cymbalta from May 07'-Nov. 08'. My symptoms only got worse on it. I also tried Lyrica for a few weeks with no improvement.
Another weird thing has happened twice now. I'm used to weird things but this was really weird. The 1st time it happened, I got out of my Suburban & walked to the back. Then I just started peeing! I could stop the flow but as soon as I let go, I started peeing again! I didn't even have to go! I have a fallen bladder & have to go all the time. But this time, no, I didn't even have the sensation or feeling of fullness. Crazy! I'm only 31! Too soon to wear supports!!! Guess I'd rather lose my pee instead of poo, lol. I am pretty sure that one of the NP ran an ELISA on me. I came in with my normal flu like symptoms & stiff neck with no sinus stuff. At this point I think I'm going to straight up ask for the Western blot. I know there are better tests but I figure it's the only one that the office will run on me. I feel like it's probably lyme but it may be Fibro. My new rheumy tested me for Lupus, negative. Now he's testing me for RA. I guess if it's negative he'll check me for tender points. I have fatigue everyday ranging from tired to lathargic. I don't have muscle pain though. I did in my neck & shoulders after the wreck but I went to PT for 2 months & it cleared up mostly. Something has got to give. When I feel good (not very often) I don't care about a dx. When I feel like poop, it's all I can think about. Like my whole life is summed up in a dx. I spent an hour on the phone yesterday crying to my friend telling her how worthless I feel. It's been 5 months since the wreck. I've basically slept away 5 months of my life. This is not why God put me here. Something has got to give. Thanks anyone that read this. I know it's long. I'm just desperate to get my life back to normal, whatever that feels like. It's been so long, I don't know.
Jen
Bacterial infections common in RA patients:
Chlamydia pneumoniae Test (CPT: 87486)—Chlamydia pneumoniae by PCR. Justification: Many CFS, FMS, MS, RA and other patients have this systemic infection along with viral infection(s).
Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s).
Almost 60% of CFS/FMS and 50% of Rheumatoid Arthritis (RA) and other autoimmune patients have one or more intracellular, systemic mycoplasmal infections similar to those found in a variety of chronic illnesses
For tests, research info and treatment considerations, visit http://www.immed.org
Chlamydia pneumoniae Test (CPT: 87486)—Chlamydia pneumoniae by PCR. Justification: Many CFS, FMS, MS, RA and other patients have this systemic infection along with viral infection(s).
Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s).
Almost 60% of CFS/FMS and 50% of Rheumatoid Arthritis (RA) and other autoimmune patients have one or more intracellular, systemic mycoplasmal infections similar to those found in a variety of chronic illnesses
For tests, research info and treatment considerations, visit http://www.immed.org
I've been dxed with RA but something else is going on too.
Well "slapped face" (SF) took over the top of my thighs & upper arms about a month ago & lasted I guess a week. Well it came back with a vengeance 2 weeks ago left for 4 days & is back again. I am in so much pain right now. No one can get even close to me without me grimacing. My skin feels bruised, sun burnt, hot, swollen but it looks perfectly normal. I'm hot on the inside, cold on the outside. Even though my skin hurts including my butt, after I sit down I'm ok.
I actually felt it come on around 7pm Tuesday night. My hands feet & face are swollen too. Not my joints but my tissues. I'm kinda itchy too. Can't rub my skin at all but I have to itch it every now & again. I feel like 1 huge bruise. My upper arms, all parts of my legs, my shoulders & back. My boobs (sorry if TMI) started to hurt so bad the 1st time it took me over. I figured it was something hormonal. Then I realized it was SF taking over my body. Even my pant legs touching my calves hurt. Even a light breeze hurts or taking a shower.
Don't know if this is part of RA or if I really have lyme. Or maybe RA & Lyme. I don't know. when I go back to the PCP & I am going to stress how bad my skin feels. My rheumy really didn't say anything. I told him & he just looked at me & kept writing my new scrip for methotrexate. I never get good help. Is it me? Do I communicate poorly? Take care everyone!
Jen
Well "slapped face" (SF) took over the top of my thighs & upper arms about a month ago & lasted I guess a week. Well it came back with a vengeance 2 weeks ago left for 4 days & is back again. I am in so much pain right now. No one can get even close to me without me grimacing. My skin feels bruised, sun burnt, hot, swollen but it looks perfectly normal. I'm hot on the inside, cold on the outside. Even though my skin hurts including my butt, after I sit down I'm ok.
I actually felt it come on around 7pm Tuesday night. My hands feet & face are swollen too. Not my joints but my tissues. I'm kinda itchy too. Can't rub my skin at all but I have to itch it every now & again. I feel like 1 huge bruise. My upper arms, all parts of my legs, my shoulders & back. My boobs (sorry if TMI) started to hurt so bad the 1st time it took me over. I figured it was something hormonal. Then I realized it was SF taking over my body. Even my pant legs touching my calves hurt. Even a light breeze hurts or taking a shower.
Don't know if this is part of RA or if I really have lyme. Or maybe RA & Lyme. I don't know. when I go back to the PCP & I am going to stress how bad my skin feels. My rheumy really didn't say anything. I told him & he just looked at me & kept writing my new scrip for methotrexate. I never get good help. Is it me? Do I communicate poorly? Take care everyone!
Jen
I'm no expert, but off-hand, I would say that you're probably looking at lyme, as you suspect. While there's a lot of overlap in symptoms with CFS and Fibro, the lack of muscle pain & tender points, and some of the other symptoms like bladder control issues, are not the norm for CFS or Fibro.
But bring up all three possibilities (Lyme, CFS, Fibro) with your doctors and see what they say.
But bring up all three possibilities (Lyme, CFS, Fibro) with your doctors and see what they say.
My left eye goes in & out of blurriness. Both of my eyes do what I call googly eyes. It's where they just randomly move on their own. My lids get stuck for short periods at a time. Eye doc says they are fine.
My heart went crazy last March. I have MVR & thought it was acting up. My left bottom ribs started to hurt & I couldn't breath. A friend had to drive me to the doc then the doc sent me to the ER. My blood pressure used to be 120/80. Since this happened it's 103/60. The ER doc said that my heart was fine & it must have been a neurological misfire. Heart's been fine since.
Jen
My heart went crazy last March. I have MVR & thought it was acting up. My left bottom ribs started to hurt & I couldn't breath. A friend had to drive me to the doc then the doc sent me to the ER. My blood pressure used to be 120/80. Since this happened it's 103/60. The ER doc said that my heart was fine & it must have been a neurological misfire. Heart's been fine since.
Jen
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