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10 Replies
Chris - June 6

I've been sick for 5 years now, with one year where everything went away, and I was very healthy. I ran,lifted weights, and did all the things I used to do... Then it came back. For three years now I've lived in Hell. Not one day where I felt good, only awful. I've tried many meds but no luck. I've been told I have fibromyalgia, but that dosen't fit all of the problems. I've got some weird rash on my face, possibly Rosacea, of Lupus. I've had blood tests for Lupus, but they were negative. I've got Raynauds and IBS, I get the shakes and have lost some vision in one eye. I was then tested for MS, again the MRI was negative. So, here I am lost. Anyone got any ideas? I hate living this way. I'm a male in my 40's


Lisa - May 30

Hi sounds like you may have a combination of smoe diseases. You may need to get tested again in few months with another MRI, to check again for MS and another bllod test for the Lupus. You may come up negative a couple times for MS and Lupus. It sounds like you have some sort of Immune deficiency disease, possibly Rheumatoid arthritis, Sjgroegrens, combined with Fibromyalgia. Most of us have other diseases along with our Fibro. Me, I have Graves disease, which is a thyroid problem, but also classified as an immune deficiency disease. I have Rosacea also. Do you see a Rheumatologist? It sounds like you need to see one. It is hell to have all these things and be in pain, and still not know what it is. It took me 4 years to finally get diagnosed!! I hope you don't have to wait that long. Have you ever been tested for Lyme's disease? Lymes can mimic a lot the symptoms you described. What type of med's were you on in the past? You may really need to see another doctor, and always get copies of your tests, so that you can have them on hand when you need them. I always sign a release of information when I go to the doctors.
I hope you get some help soon, this is such a debiltating disease/syndrome. Good luck. hope to hear back from you.


chris - May 31

Thanks Lisa.... I've been to quite a few doctors, even one that specialized in Lupus. However the GP I was seeing at the time didn't really believe anything was wrong with me, and so that didn't go too well. I have a new doctor that seems willing, she's sending me to a couple of specialists and perhaps I'll get some help. I've been on effexor, celebrex, naproxyn(?), and other NSAIDS, but all they did was wreck my stomach. I went without any medication for almost 3 years(PURE HELL!), and am trying some new stuff that, hasn't been much help yet, it helps me sleep, but my energy level is almost nil. I get up and go to work, but everyone here knows I'm having a very tuff time of it. I've been to a Rheumatologst, he's the one that picked up on the Rosacea. He prescribed some meds, but my doctor at the time refused to give them to me. I also have some bones in my neck that are messed up. C5,C6,C7 are slowly joining together, so one of the doctors I have to see is a nerve specialist. Well, I didn't mean to ramble. Thanks for the info Lisa, it's good to meet you. "Solve et coagula, et habebis magisterium!"


Lisa - May 31

Hey Chris~~ Have you ever been put on any pain medication, like Ultram( a wonder drug for Fibro!) or Darvocet, Vicodin, anything like that? I know they are narcotic's, except the Ultram, and I have learned (the hard way!) that I had to get my pain under control because the pain was stressing my body out so bad, I was having panic attacks, muscle spasms, blood sugar sky-rocketing, blood pressure up, all due to uncontrolled pain. Once I got a pain program going with my doc, a lot of my symptoms calmed down dramtically. All the NSAID's did to me also was tear to up my guts. Ask your doctor for a pain medication like Ultram, it is really a wonderful medication for Fibro, Non-narcotic. I was on it and It worked so well until I had to have back surgery, and then I had to take a narcotic type medication, which, Thank God, lets me have some semblance of a normal life. The rash is a strange symptom, is it a butterfly shape over your nose area? Or is like dry scaley skin all over your face? Does hydrocortisone cream help at all? I wish these doctors could help figure this stuff out. if they can't, how can we? Keep your chin up!


Chris - May 31

Hi Lisa; I've been given Tramacet to try, but haven't tried it yet for fear that it may interact with some of the other stuff I've been taking. I haven't heard of Ultram, I'll look it up though. I have to watch what I take, I have to climb on top of Vehicles sometimes and they can be pretty big. I don't like doing that Stoned. I'm and electronics technologist by trade, and am working fixing communications equipment. So, it would be nice to keep my brain cells intact. My ability to work on tiny objects isn't very good as it is, what with the shaking going on. I manage though. I have a high tolerance for pain, but constant pain is another thing. I had one "specialist" tell me, "look, it's only pain, you can't hurt that much, you look ok" Yes looks can be deceiving. I do believe that if those of us with these problems layed on the ground and screamed, perhaps they would believe us, but where is the diginity in that? I'm from Canada, and I have no faith in our medical system here. They treat you like cattle. Shove you in the door give you pills and tell you to come back. Well, I live in hope that someday we will all get the help we need. Foolish I know, but I do honestly hope that will happen. Einstein once said " The only difference between genius and stupidity is that genius has it's limits." Perhaps our doctors should read this and think about what they are doing......


Lisa - June 1

Hi Chris~~ Hey try the Tramacet, It is Ultram under a different name, a little lower dosage, though. Hey I hear ya, I guess you have to have gaping, weeping wounds in order to classify as "Sick" because, we all look great! I have heard that going to the doc in Canada is rough, with socialised medicine and all. You should try your tramacet on the weekend, or when you have at least 2 off to try it. I do that with anything new, just to see how I react. I hope you will get some relief, pain is the great equalizer, I have always said. It can wear you out, literally and make you depressed and crabby. A day with out pain is a blessing, because they are far and few between. Good Luck. Will check back and see how you are doing.


chris - June 1

Hi Lisa; Thanks for all the info, you've been very helpful. I'm on Lycria now, only two a day, but I'm going to go off it soon. I don't like the memory problems. I don't believe in taking anything that is addictive. The human body is designed to heal itself, but in the case of those of us with chronic disease/disorder our systems have run wild. I'm doing everything I can to get back to normal (for me)
Diet is a lot of it. There is so much crap put in our food now, which is why I don't eat meat anymore. I feel better, but still have a long way to go. I wish you luck Lisa, and thank you again for your kind help and all the info.
And thanks to those that designed and take care of this wonderful website. It's one of the best sites I've found yet.


Hi Chris~~ - June 2

Hope you can feel better soon. I tried the lyrica, and I reacted so badly to it I had to stop. I was bummed. But, As you said, Diet has a lot to do with it. Do you eat refined sugar? I was also told to avoid yeast. The more natural the diet the better. Are you a total Vegan? I only eat meat maybe 2 times per week, and no red meat. I just started to do that about 6 months ago. I think it has made a little difference, but it is better anyways.You don't drink diet pop do you, especially ones with Nutra-Sweet in it? I was told it is deadly to FMS people. Tramacet is not addictive, so try it. When pain is under control, our bodies aren't stressed out. Do you sleep poorly all the time? I know that is a big thing with FMS, poor sleep. Not being able to get restorative sleep can be awful on the body. Well, have a good day, and hope you feel better.


Chris - June 2

I'm going to try the Tramacet when my neck bones are acting up, the arthritis there is a real nasty problem. I'm more of a Lacto Ovo Vegitarian. I stay away from refined sugars and don't drink soft drinks. You have to really be careful of the High glucose corn syrop that is in so many things. My sleep patterns aren't the great, but I do my best. I tried 5htp Hydroxy Tryptophan for awhile and it worked great, for awhile. I don't use any artificial sweetners. I don't eat chicken, beef, fish or any meat. I used to, and always believed I would, but now that I have Fibro I don't. I'm glad I stopped, but it honestly hasn't made a huge difference, but it has made some and I'm happy for that. I guess what I find most is the chemical sensitivities that we "Fibromites" have. Thanks for the info, and good luck with the Fibro.


Jean_ - June 4

Hi Chris, sounds like what my problems have been. I will tell you that MS can be invisable and non detectable for years and that is why I'm going in for another MRI because I'm not buying the Fibro thing yet. My right eye problems told me in the beginning this could be a possibility. So, I like you am waiting and trying to beat this thing and doctors don't seem to help much. Doctors need to put down a diagnosis even if they do not know what is wrong, that is how insurance gets paid. So the question is What do I have? We wait and see. If after a flare you find you have lost no mobility then your system healed that time. If it doesn't heal then maybe it could be MS. That is what I'm getting out of my reading and doctor visits. Have you been screened for Myasthenias Gravis? That also starts with the eyes and then goes into the muscles. I'm waiting again for results. Hang in there, time will tell.


chris - June 6

Hi Jean;My left eye was the problem for me, I got up one morning and it was like looking through a steamed window. It finally settled, but only after about three months and now I need glasses all the time. I used to just wear them to read with. Sometimes it just seems that the doctors are just passing us around to their friends to make some money. I just hope to get some answers. In the mean time, I keep working at this myself.



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