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15 Replies
marcos5879 - September 11

So I hesitate to put myself in the ranks of those in whome I read about, because OMG some of you are in a bad way.
So I have been doing my own research because I "THINK" I reiterate THINK, that I may have the curse knows as Fibromyalgia. Please tell me those who suffer am I crazy? I know that some are unable to leave the wheel chair, I still work.

So a brief description.
I am in .....well my 30's. I had a spinal injury when I was in my teens....we need not describe the stupidity that caused it. But I wasnever quite right after that. It started as simple back pains from time to time. Then I got this wierd thing in my shoulder (which I thought was from football) where it feels like I blew out my shoulder to the point that I can not lift my arm without tearing up. Then POOOF it's gone I can move. This became more frequent over the years. Then I started to get pains in low places. Strange, local, sharp, doubling over pains in the abdominal reigon. Then POOOF gone I'm better. Now I get the total loss of thought mid sentance, blurred vision, cant sleep, panic attacks, fear that I have a cancer or something..then POOOF gone I'm better. My good days were longer with intermittent pain. Now it's pain with intermittent good days. Latest and greatest is the feeling of being hit by a truck all over like I have the flu. It hurts to stand, but I do cause I have to feed my family. I get to were I cant shufle card cause my hands hurt. Two days latter POOOF I'm better. Docs don't buy it cause I admittedly had a........ shall we say proclivity to illegal substances. They believe me looking for a high. Well I have a PANIC attack at the thought of taking ANY pill even tylenol because I have a family and something to live for now, and I fear the ramifications of my past and the side effects of current meds. And let me tell you the panic attack makes you think your going to die from a heart attack you feel so worked up. I have had to pull off the road and strip off my clothes ( only to a point you dirty birds) to feal unrestricted. I just deal until I cant deal any more and then I deal somemore. The Caviat! I have never hurt so bad I could NOT do anything(except shuffle cards and lift my arm). It hurts but "I can". So I guess what I'm asking is Based on what I read I think I have it maybe mildly? But the more I read the more I think I don't because DAMN some of you are in a bad way. I feal for all of you. If what I get in my hands and abdomen you feel all over, my God I shudder at the thought of such hell. So Now that you have sat through a disortation please, I want to know if I am off base or if I could be truely dealing with something.
Also Does anyone know a Dr. in the North Charlotte area that I might see to find out?

I'm tired ya know ALL THE TIME! I want to do what I can't do......sleep through the night! Wake refreshed, and no pain. Oh and remember what I was saying.
So any one want to tell me to go hell with my hypocondria, or something it's cool, I'm down with it.
But if you can help I'm REALLY down with that.

Thanks

 

marcos5879 - September 11

If you thought wow this dude can't spell, your right, I can't. I like to think it's my fibro, hahahahah.

 

Fantod - September 11

Ok - I sorted through your disertation and here is what I think. All of us were young and stupid at some time in our lives. Nothing to be proud of but we've all been there to some extent or another. That being said, I am very concerned about the severity of your panic attacks. I can not imagine the mental anguish you must be feeling never mind the physical problems. When was the last time you had a complete (and I mean complete) check up? Secondly, if you want to pursue the fibromyalgia (FMS) scenario
go to the website of the National Fibromyalgia Association. They will help you find a fibro-friendly doctor in your area. Last but not least, don't be so hard on yourself. It took a LOT of guts to sit down and ask for some guidance. Your honesty was refreshing and I hope you'll tell it straight to the professional trying to help you. You may or may not have FMS but you certainly need to get to the root cause of all of these terrible symptoms. Keep the faith and let us know how you are doing. Take care.

 

VictoriaB - September 11

Heelo and welcome to the fibro family because that is exactly how I have felt before being dx. I agree completely with Fantod, first you need a good physical exam with labs to check thyroid, basics, and maybe more endocrine studies. Find a LOVING and kind fibro person and go from there. I thought I was losing it, I had all these wierd symptoms and would go to the MD and then it would be something else. My sis tried to tell me i had it because she knew having had it for years. Well, when I start researching it, it was like reading my own journals-I had all these symptoms. My med books had one sentence about Fibro and it described the tender points, that's it. I felt hope or inclusion of some sort knwing i wasn't alone. Good Luck and God Bless-V

 

JJ1 - September 11

Except for the panic attacks, you have described my symptoms to a tee. I have episodes of pain but it has never been completely debilitating. I have been laid down a day or two by the feeling like I am getting the flu, though. And the speech and memory problems can be bad for me. I have been diagnosed with fibromyalgia but because my pain isn't as severe as others, I often question if that is what I really have. You really should see a rheumatologist. They are the type of doctor that diagnoses Fibromyalgia and other illnesses that can have similar symptoms. See if there is a local fibromyalgia support group that can recommend a good doc in your area (all rheumatologists are not the same).

 

marcos5879 - September 12

OK one at a time
Fantod- if I had as many needles sticking out of me as the docs have stuck in me I woudl be a porcupine. Latest diagnosis..... low strength in my lower back.....because it hurt when they pressed on it. My internal medicine doc said, nothing is wrong with you it's probably your desire to get high, my family doc said, with a shrug I don't know let me send you to docs that will cost you thousands with Insurance. I said I cant I refuse, I will feed my family and see to their welfare before spending that money on my non debilitating pain. NFA gave me a letter saying well nothing. I guess I have to call some one to find a Fibro frendly Doc. I will do so. Ohh and an "er"not doc not my doc gave me ativan for the panic attacks seems to have helped.
Victoria- finding loving Fibro people is why I am here. =) And I think more in my family have it, but they just pound the pills and call it a day. My honesty seems to bite me when I talk to people because (unlike you guys) Iget judged immediatly after admiting my downfalls. I get the shoulder instantly. Especially that Fibro is mysterious, and pain related. It's the perfect cover up, next to migrane headaches to a pill head such as I WAS. I didn't believe people when they said Karma.
JJ1- How so when you say all rheumatologists are not the same? I know zip zero zilch about the group. Is there something in particular I should look for? And what do you do about the memory and speach problems? How do you compensate or cover when you are in the middle of talking to someone and go completely blank? Or when you know you must fallow a conversation and trying to fallow is what causes you to lose the conversation. IT is primarily, oh and the dizzy spells, what sends me into panic attacks because I think"what if it's like a brain tumor or something". Feel the face go flush and run outside to get some air.
To All- Thank you so much for your comments. I wonder though as much as I hat ethe thought of having and not being diagnosed, I would hate to be diagnosed improperly with a condition. Ya know. Is there something I should be looking for when I see a doc? I know I am long winded but I am this thread is my coming out on the subject so I have allot to say and question so forgive me if I get annoying. My last question. Has anyone done a report or study martial arts as an option. I know that they tend to lean towards mental and physyical stability and maybe the streching and the sort would help? Somethign I was thinking of trying. But the thought of geting a hit or kick seems.. well painful. I am goignt to watch a session teusday to get an idea. Thanks again guys for everything.

 

marcos5879 - September 12

DAMN! I really suck at this! I read over it three times before sending and it looks right. Then i post and reread and see all kind of spelling and typing errors. Please dont think I am an idiot or something. I really am better than I have been showing here.

 

ibritz - September 12

I agree with those before me stating to stop putting yourself down. I don't believe in karma, so to say, but my daughter was a hypochondriac and now I question her as an adult, stating she has all these different things wrong. And me, who am I to question her when I have fibro? So I can understand where others may question your pain. It has taken my husband 5 years or more to believe my pain. I am only now realizing all the issues this disease exposes. I have a hard time still. But, you do need to find a doctor who will diagnose you, for a start. Once you get a diagnosis, it at least makes it real. It will be difficult to find one to treat you. There are several posts on this site, and others, that may help you without meds, but approach those carefully, some are off base. Look for those stressed as useful by several people. Keep a list of how you feel and what you do, and if it helps. Then when you find the doc that will treat you, you have some info to show you are serious about this pain, and that it is real. God bless you.

 

Fantod - September 13

Hello marcos5879 - Just checking in to see how your thread is progressing. I hope you will contact the National Fibromyalgia Association to get the name of a fibro friendly doctor in your area. My own bad experience was with a physiatrist who walked into the exam room and announced in a very loud voice "I have a big problem with fibromyalgia." To which I replied "So do I, I have to live with it every day." I threw him out of the exam room. left and wrote a letter of complaint to the hospital he was affilitated with. He was offically censored by the chief of staff at that hospital. Get ready because you are about to become your own best advocate when it comes to getting help with FMS. I'd ask for a couple of referrals from the FMS Association because the first one may or may not be a fit. At this point, I have more doctors than relatives.
Through trial and error, I have become educated and a quick judge if someone has my best interests at heart. In addiiton to seeing a rheumotologist, consider finding a functional medicine specialist in your area. This would be a holistic doctor who is also an MD. Because of your history, some homeopathic medicines may be safer for you to use. I use a mix of holistic and conventional medicine as I am extremely sensitive to medication of any kind. I treat all medication like cyanide because I have had some pretty bad reactions. The bottom line is that you have to live with all of these symptoms and someone needs to figure out the root cause. The fact that you are very candid about your history should be a good indicator to any professional that you know your boundries and respect them. I feel pretty confident in saying that if you think a recommendation is not in your best interest you'll speak up. Go with your gut on this when you see a new doctor. If the dialog is one-sided, move on. As for the memory and speech problems. once you start getting some proper sleep some of that may subside. I think that to some degree, fibro-fog is a direct result of being sleep deprived. I just say something like 'I'm a total idiot today" or "I'm having a senior moment" to cover these lapses. Most folks will laugh and the whole thing is forgotten. If I having a spectacularly bad day, I will say so up front without whining so everyone understands I may look fine but I am not firing on all cylinders. Taking the initiative removes speculation on the part of other people. By the way, spelling mistakes and inverting letters is also a "perk" of FMS even though you may have proof read your entry. Why this site (of all places) does not have spell check is beyond me. Let us know how you are doing. Take care and enjoy the weekend.

 

ibritz - September 13

Well said, Fantod. You always say things in such a more articulate way. I must say, I've learned allot from you on this site! Thanks!

 

Gabbie - September 14

I have to agree with everything that everyone has said here. Marcos, fibro is a condition that can come and go and the severity is different for everyone. That is why unless you have it, you can't understand because we don't necessarily look sick". As I have experienced, over the years new symptoms appear along with the old and they too change from day to day. Please do not feel that you are "crazy" and you are not a hypocondriac because the pain that fibro sufferers feel is very real. I encourage you to see a rheumatologist that believes in fibro so you may be properly diagnosed. I wish you well.

 

VictoriaB - September 14

Hi Marcos,
I did forget to tell you that one of the best things to do for yourself is to get a massage weekly!! I know they are expensive but you can go to a school of massage to get them from the students at half price if there id onr near you. Also you amy have to visit a number of docs. until you find want that fits you!! Make lists to help your memory and don't give anyone who puts you down the time of day!! We all make mistakes but you know-we are only HUMAN!! life is so short! Best of LuckV

 

marcos5879 - September 15

Wow you guys rock!!
I know I know you are surprised that I have a new question.
So I work in sales, and I am caught in a spot where I feel like I should say something to my employer about the possibility of having the joy of Fibro. But without diagnosis and the potencial of not having one for a couple years, can, should, or would you? Did you when you were on the cusp of dx. I tell you sometimes I want to to give them a reason for the oddities in my function and abilities. The shear fog somedays and clear upbeat fun loving person the other days. They probably think I am a stoner because of how one day I can barely remember my name the next I could rattle off a history lesson on the USA from the War of King George to the Persian Gulf, and the Panamas in between. Dizzy one day dancing the next. But I don't want to call out ipso facto on something that may not be the case. And well it looks suspicious to an employer I would think. On the flip side if they looked into it, it may cause them to go a touch easer on me when I'm......off. Ya know?

But thaks again y'all are the best peeps I've met yet.

Ha I told you I could do it =)

 

Fantod - September 15

Letting an employer know that you have a chronic illness is a tough call. I think you would be better off to wait until you have some definitive results before saying anything. The reason I take this position is the ADA (American Disability Act). If they decide to do something like fire you because you are ill; they might think twice. You'd have grounds for a lawsuit. Not that anyone should have to go there but some companies are short on the warm and fuzzies and long on having no feelings whatsoever. You will, of course, need documentation from your
doctor with recommendations on how you can best be accomodated. Your employer, by law, is required to accomodate you within reason. Some are better than others about this. The latter can always be dragged into court for an expensive lesson. I'd take some time to read up on the ADA online. Get yourself on a rheumotologists schedule sso you can resolve this quandry as quickly as possible. Take care.

 

JJ1 - September 15

Since you have not been diagnosed, I would recommend NOT telling your employer you may have this. You could say, if it becomes a problem, that you have something going on that is causing periodic fatigue, pain, etc. that you are trying to get diagnosed and remedied. At this point, you may feel like what you have is Fibro, but there are a lot of things with similar symptoms and I don't know if you have ruled any of these out. Lyme Disease, hypothyroidism, Lupus, rheumatoid arthritis, celiac disease, anemia, chronic fatigue, reynauds disease, to name a few can all have similar symptoms. You really need to see a rheumatologist. When I said earlier that they aren't all alike, I was referring to the unfortunate fact that not all of them recognize/treat fibromyalgia. That is why it is good to go to a fibromyalgia support group or website to find a referral, as has been suggested.

 

Fantod - September 19

Marcos5879 - No to martial arts, yes to Tai chi. The latter is highly recommended for FMS. It is actually very good exercise even though it looks like not much is going on. Unfortunately, I am not able to do it. I have advanced osteoarthitis - picture the Tin Woodsman prior to the oil can doing Tai Chi.....lol.

 

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