Lyrica and stupid doctors
 

I need some feedback. Had my followup visit with the spine doctor today about my lower back pain. Remember last time he tried to brush me off.

So I told him that I don't want to take pills, that I do not show MS clinically, that I have been found to be a 'well-rounded person' and that I don't like being brushed off ( I didn't say it quite like that). I reminded him that this pain point has been active for 3-4 years, that I hoped it would go away on its own, and that I continue to have pins and needles in hands and feet...bla bla bla....

So he asked if I want to continue PT, I said I saw value in it, so yes. He harrassed me for NOT taking zanaflex every night. Then he throws Lyrica at me (gives me a prescription). I said isn't that for Fibro? He said yes, but for nerve pain too....I said well, I don't think I meet the criteria for Fibro and he said to give it a try for nerve pain. I don't have PAIN associated to my hands and feet, just annoying. Then he scheduled me for a "Nerve Conduction Study" and ran out the door. I also told him that the only relief I've had was the cortizone shot in December....he didn't offer up another one.

I'm feelling like this guy's anwer to everything is pills. Because HE can't figure out the source of my pain, then I must be crazy. I think he's wasting my time. I looked up the Lyrica and it dose not look like a user friendly drug and could casue me MORE problems.

Meanwhile, still sick over my kitty cat.....

Any words of advice or wisdom?

Thanks

If you dont want to take the Lyrica, dont take the Lyrica.

My doctor gave me Baclofen, told me to take one pill twice a day.

I dont take it every day, probably once or twice every few weeks if I notice some nasty nasty spasticity...and I dont even take it full strength. I'll break it in half and either take the half, or I'll break the half in half and take 1/4 of a dose. (I dont like how it makes me sleepy all the time. I did try to take it as prescribed, and I ended up sleeping for two days in a row)

When I went back to see him, he asked how the Baclofen was working. I told him how I take it, and why. He said that it was there if ever felt the need to take it more often. He didnt seem disturbed that I dont take it as often as prescribed.


If you dont take it, and you go back to the doctor and he asks how the Lyrica worked, tell him the truth, you didnt fill the Rx, because you didnt feel like he listened to you when you saw him last.

Oh, and Lyrica is prescribed for Fibro, but it's got a few other usages (controlling epileptic seizures) I dont think it's just for Fibro tho...a lot of medications can be used for many different medical problems.

My point is Erin that I think this doctor is a wacko. I told him today that I don't think he is listening to me. That I may not be his worst paitent, but I am hurting, that maybe he is missing something....I think he thinks its all in my head. He has that deer in headlight look when I talk to him...

We all know that Fibro is a condition that many doctors don't think exist. I do NOT have the area's of pain associated to Fibro...none! Just this one spot on my back. I don't know about the lyrica, it says it makes you fat....I don't need it!

So I guess the answer is to just forget it all, never go to a doctor again and give up. Live with it. All of it and let the morgue figure it out when I die.

I'm going to see my PCP tomorrow, and maybe consider a Neurosurgeon....and then I'm done with everything. Done done done!!! I've had it!!!

I take lyrica for nerve pain. I do not have fibro. In fact, because I don't have fibro or diabetic neuropathy I had to fight and fight to get the insurance company to pay for it.

It works wonders for me with the nerve pain.

A nerve conduction study may give the answer as to what is causing your pain.

Dont tell your regular doctor that you think the other guy is whacko...just say something like you think he's not taking you as seriously as you think he should.

It does seems that the whacko doctor is trying to address the pain that you told him about. He's not trying to treat you for fibro, he's trying to help you with the pain. Lyrica is used as a treatment for nerve pain, and it does sound like he's trying to help you with that. The Lyrica isnt made to specifically help nerve pain in your hands and feet...if you have nerve pain anywhere on your body, it should help whatever nerve pain you have.

I've thought about asking my neuro or my regular doctor for some Lyrica, I have low back pain that is either from a back injury that I got in 1999, or it's caused by MS. If it's caused by MS, it's probably nerve pain, and maybe it would help.

I saw the side effects when I looked it up, and I dont like them either...mostly the whole thing about dependance on the drug. I dont like taking meds that I could potentially become dependant on. Which is why I havent asked for Lyrica yet.

But, whacko doctor has offered you an option (the Lyrica) for your pain. Is it just the potential side effects that are keeping you from trying it, or is it something else that's making you to not want to try it?

Not everyone is going to experience a side effect. It's just a list of things that were reported by people during the trials they did when studying the drug. It's something to watch for, but it's not a guarantee that everyone will experience the side effects.

I have to ask, is one spot in the spine related to nerve pain? Again, my pins and needles in my hands and feet do not hurt....I didn't think I have nerve pain, but spine pain....Maybe I don't know what I have :(

I don't take lyrica, but I do take the generic form of neurontin for nerve pain (numbness, tingling, and burning) and it does help. If you do not think it will help or if you do not think you need it, you don't have to take it. But it is described for nerve pain. Sounds like you need a doctor who listens... are there any out there?

Your spine is full of nerves. If those nerves pathways have been disrupted somehow (MS lesions, trauma from an injury...) then it's a nerve pain. A medication for nerve pain, Lyrica, Neurontin, Cymbalta, might help. Your doctor has suggested Lyrica...you can always tell him you dont like the sound of the side effects, and you can ask him if there are any other medications for nerve pain that dont have the same side effects.

I was Rx-ed an antibiotic a few years ago. I read that one of the side effects of that particular antibiotic was numbness/perhipheral neuropathy. Seeing as how my toes were numb, and I had numbness in my right thigh at the time, I asked for something else...since I already had numbness, how would I know if the antibiotic was causing it, or if it was a new symptom. They wrote me a script for something different.

You are allowed to ask if there's something else you could take. You're also allowed to ask if you can have them change the dosage. Ask if you can start off with a lower dosage if it's allowed.

My thoughts on Lyrica!
It helped me a lot at first, but than by one month we (Dr & me) had to up the dose. Than had to up it again & again, well at 6 months I was at the max and it wasn't helping much at all and I had gained 60 pounds. It toke me 6 awful months to get off of lyrica. It was hard and I had bad with-draws. It than toke me over a year to loss the weight.

Oh and I toke it back before they labeled it for fibro.

Been there; Done that!! :(

One Neuro said there's nothing wrong with you. Another said stay off the internet. When I mentioned symptoms of MS he said one said you don't want MS because the only treatment is worse than the disease.

My last Neuro was just staring at me as if I was wacko! He just kept me medicated and not trying to find out the reason for my symptoms just treated them and not me. As I was leaving his office I asked for a final bill to be sent and I finally found a Neuro who listened.

She looked at ALL my MRI films and went over them with DH and I and read other reports. She finally said since all your spinal taps (5) didn't show anything I can't diagnose MS even though you fit the criteria.

She did diagnose me with CIS (Clinically Isolated Symptoms) which is a pre cursor for MS. At last a diagnosis! It took about 10 years several Doctors and seven Neuros to get an answer.

People in "limbo" know how it is because all we ask for is an answer and if the Doctor doesn't know they should say so and refer to someone who can help.

I have my answer. I feel better knowing.

It worked for a while for me too - for SM nerve pain.

I'm not saying you should or should not try it. Just sying you won't know if it helps unless you do. Sometimes you have to try every thing out there to know what's going to be just the ticket, you know? I've tried over 40 meds now...

:eek:

(I only take topamax every day. I only have RX's for that, 2 muscle relaxers and Flector patches. But it took me almost a decade to get here.)


I did gain about 6 lbs - but it was my own fault. I ate like crazy while on Lyrica.

I did not like that I felt stoned for 12 hrs with each dose - 75mgs to start, then 150mgs as many as 3 a day.

I didn't feel safe to drive. Can't live like that. And my ankles started to swell - that's when I got off it. Plus, the 150's seemed to help less than the 75's.

:confused:

Then no relief at all.

I think the question here is, what did you want from this doc or any doc?

More cortisone, if I got you right.

And this guy didn't even reply, so you have no idea why he didn't go ahead with that. Probably no reason not to.

When you say spine doc, that can mean a lot of things though. Neuro surgeon, osteo surgeon, chiro, anesthetist, etc.

Regardless, another may have something else to say. Your PCP may go ahead with the cortisone - or tell you who can offer that for you. And you may have to be very direct in asking

"I came to ask about cortison - can you set me up with that for my pain? Or can you send me to somebody who will? My other doctor is not doing it, and it worked well last time."


Good luck with this, and everything...

:hug:

Its says it makes you fat.............:mad::(

Go to a pain specialist. An anesthesiologist (an anesthetist is a nurse that specializes in giving anesthesia...my dad is an anesthetist)

My mom goes to a pain clinic every few months. She gets epidurals in her back for her low back pain (she has spinal stenosis) The epidurals are still helping, but not as much, so now she has a TENS unit. Which is a little electronic device about the size of an iPod. It's connected to wires that are attached to sticky pads that you put on specific places on your back.

When it's turned on, the electricity from the battery powered TENS unit somehow makes it feel like it's vibrating (sorry, not sure of the specifics on how the electricity is conducted)

What it does is disrupt the sensations of pain going from the affected area to the brain. My mom's anesthesiologist told her that it basically distracts the pain signals from reaching your brain, and you instead feel the vibrating sensation instead.

TENS units cost from a few hundred to a few thousand dollars (my mom's unit is in the cheaper category) I'm pretty sure you dont always need a prescription to get one.

Ask your doctor to refer you to a pain specialist. They might be able to help you figure out what's causing the pain, and then they can treat your for it with things like the TENS, or medically with epidurals or spinal blocks or patches that contain medication.

I looked it up...it's a potential side effect. It doesnt make everyone fat. Sometimes it's not actual fat, but edema (swelling from fluid buildup)

You might have to adjust your caloric intake, or exercise if you can (everyone needs to exercise anyways if they can)

I know Lyrica somehow causes some people to crave food. (pretty sure Neurontin does it too) But, if you're still doing PT and and do some exercise, you might be able to balance out the exercise and the weight gain so you can try to stay at a specific weight.

I do not have experience with any of these meds personally. Just going off of what I've read and what I've been told by my regular doctor when I asked about Neurontin and Lyrica when I first started to experience numbness 2yrs ago.

There are several other medications that dont have the weight gain side effect. Ask the doctor about those. The fear of the weight gain is a great reason to question the doctor on the medications. Ask him what other medications could you try first instead of the Lyrica.

Erin, he is a pain specialist......

Others; I guess all I want is to sleep. To wake up without pain at 2am, 4am, 6am...To feel normal. I want to lift things off the floor. I want to do laundry and sweep, and go shopping, without paying for it all night. I hear Julie talk about Lyrica and you too brain, and fat, increasing the dose and ultimately no relief and addicted and going thru withdrawls....

This is no life :Bawling:

So, my mom just called...she is so mean to me :Bawling: She called "Just to ask why I have no sparkle in my eyes and no color in my cheeks".

Anotherwords, I look like **** and why is that? Well MOTHER, maybe because I have not been sleeping right and I cried over my kitty yesterday before I met up for dinner. She says... OH, and lets not forget if THE DOC CAN'T FIND ANYTHING...there must be nothing wrong with you. WHATS WRONG WITH YOU JEANNIE? I'm sooooo worried.....

She's mean just to be mean to me....she gets off on it...not just today, but all my adult life!

I'm sorry....I have to get off....:Bawling:

But Janie...thanks, your experience helped me feel a bit better....hope of some kind, some day.....maybe.....limbo sucks! You can't see pain....it just is!!

I may try the lyrica for a day, here and there when its so painful I can't take it....

Mine was FAT and not edema. 60 pounds of it. :(

If you want to try it do it for a week, I didn't feel any help the 1st day but did some by the end of day 2. One week isn't going to make you fat, just watch EVERYTHING you put in you month. :D

Erin's right, it does not make everyone fat. Elavil says it makes you gain too. I never gained a pound while on it nor lost a pound when I got off.

I did gain on enderol. For no reason, I packed on 2 pounds per day.

Lyrica just gave me the munchies. no other way to say it. I felt like Otto the bus driver on the Simpson's.

:p

But you might want to try magnesium instead. No weight gain and it helps nerve pain. Plus is cheap.

Erin - (where my brain is today who knows...) anesthesiologist. I had that word in there somewhere. That's what I meant thanks for straightening that out.


I was wondering if TENS is like electro stim they gave me at PT? I loved that. I'd buy a unit if it was similar, because that really felt good. Helped unclench everything.

I tried the TENS a few years ago...no reaction...no relief....But I DO THANK ALL OF YOU for offering ideas up.

I didn't know that, I have been taking a lot of magnesium lately for restless leg syndrome and my over all pain is better and I didn't know why. So I guess it's the magnesium helping me. :D

DD & DH both came to my rescue. They KNOW my Mother. She really upset me. They both say I look beautiful, happy, perky and they think I'm doing really well. Since I live with them, and they are always honest with me...I feel much better.

Does nothing for the back pain, but will fill Lyrica tomorrow and give it a try. I'm also contacting the new Neurosurgeon that came to town a few months ago and getting help from what is SUPPOSED to be the best in the State now. See what he says. I bet if they removed the bone spur, I'd be fine...

:grouphug:

PS: I'm also going to ask the PCP tomorrow to schedule me for a "Sleep Study" so someone can watch me in pain while I sleep...and what its doing to me. Anyone ever done this? I know it sounds odd, but this is when I have the most pain...at night. I think, FWIW, that my bone spur is pressing on my spine only when I lay down...or try to pick things up....makes sense to me....

I am not sure if lyrica is exactly like neurontin, but if it is you can not take it on an irregular basis.

Yes, that is right. Lyrca doesn't work if its not taken on regular basis.

Lyrica is the newest generation of Neurontin....

The patent on Neurontin had expired so was available to become generic... Lyrica supposedly has less side effects than neurontin and is higher strength at lower dosage.


I've been on it for almost.... wow... almost 3 years.

I gained weight but can't/won't say it was directly related to Lyrica alone.

Also... it took me longer than a week to know if it was working or not... I take it for RSD. No Fibro, No Diabetic Neuropathy....

Also you can't take it off an on.... you have to take it consistently and not stop suddenly.


:hug:
Abbie

Julie,
Since you have a Fibro DX, I'm wondering how that came to be? Here is a list of SX I found, and I suppose I could fall under some of these descriptions:

Muscle pain--yes--most in the back
Fatigue--yes--because I don't sleep
Trouble sleeping--yes
Joint pain, stiffness (sometimes worse in the morning) --yes
Headaches -- Never a big complaint, but yes, come and go
Restless legs -- I have a DX for this
Tingling or numbness in hands and feet -- YES
Problems with thinking and memory (sometimes called "fibro fog") Comes and goes
Leg cramps-- Not really
Feeling nervous--Not really
Depression-- At times
Feeling dizzy or lightheaded--yes, more if I'm down and getting up
Painful cramping during your period --what is painful? It hurts sometimes
Jaw pain --I clench my teeth at night...so yes
Upset stomach, cramping, bloating, feeling constipated or diarrhea--if I eat the wrong foods, yes
Trouble swallowing --never, but a phobia :)
Frequent or painful urination --frequent, but not painful

It also says you have to have these 'points of pain' throughout the body. Not that I've ever thought about, none that I'd say yes to except my back....so when I've looked at Fibro in the past, I could not wrap around it because its mostly my back.

So I ask you....WTH to YOU think???

I'm not dx'ing myself, but since the doc wants to do a Nerve Conduction study and wants me on Lyrica, I feel he's leaning this way now, maybe he just has bad bedside manners, but knows his stuff (His resume makes him look like a highly educated doc)....

What is your opinion of this Fibro thing that SOME doctors don't think exist?

Just to be clear, I'm going to my PCP tomorrow...going to bring all this stuff up...and was thinking a sleep study and a neurosurgeon...but what about a Rhumy? I've never been to one....is that worth a try?

Does Fibro exist or is it a name for a loon? <grin>

How does low back pain turn into this? I'm so darn confused today....someone shoot me now!! :)

All with personal knowledge are welcome to provide input :)

It could be that he's trying to rule out fibro..

Hi,
Thanks for answering...does it make you feel bad? Does it make you feel high? Does it make you sleep? I don't want my personality to change on a drug, and I hate taking any drug...esp one I'll become addicted too. Do you know why its addicting? Does it make you HAPPY :D is that why its addicting? I know I'm full of questions today, but I take seriousely any new drugs I introduce into my body, esp without a dx...

I may be over reacting....because I feel like my pain is centralized in my low back with pins/needles in hands/feet....I'm confused how these few sx become a Fibro thing? I know you may not know, but does someone?

Sorry I'm asking so many questions...and I'm going to the doctors...I'm just exhausted, confused, torn and suspicious :) of a doctor just throwing drugs at me without a REASON.....I know Lyrica is for other things besides Fibro...but the list is pretty small and I'm not Diabetic....

Can anyone talk about Neuropathy?

Good Point....hmmmmmmmm.....

1st off have you even had the tender points tested? Do you have bad fatigue?

Fibro is VERY real and I'm not just saying it because I think I have it, some Dr.'s don't like to belive what they can't see. Fibro doesn't show up on blood test, MRI, x-rays, etc so some Dr.'s don't think it's real because they can't "see" it.

LOTS of people that have other issues (MS, diabetes, cancer, etc) have fibro also.

I got DX by a Rhumy, I had back aches and headaches that never ends and muscle stiffness and awful fatigue that had been going on for years and was only get worst.

If I were you I would see a Rhumy and tell him/her your SX and that MS (and anything else) had been ruled out but you Know sometime is going on. If you do have fibro that still might not be the only thing you have.

I have read and the chiro told me that my fibro could be caused by my neck problem.

You know I have had back & neck aches forever I didn't even know it was as bad as it is, I just thought everyones back hurt like mine did. :( I though most of it was just muscle stiffness from the fibro. I NEVER remember a time my back didn't hurt. :(

I don't want to take up a LOT of room here and post my SX list again but if you want to see it again just let me know, I can even just PM it to you.

Thanks Julie,
I did read up a bit, and found it very interesting that people with a DX of Fibro, also have MS....There is a connection...also Rhumatoid Arthritis and a few others. But anyway...I saw you write about that too, I had no idea.

Autoimmune diseases are TERRIBLE. I'll see the PCP tomorrow and let you know what he says.

Anyone who knows what is wrong is darn lucky.

The rest of us? It never ends, you throw money at dead ends, You constantly question yourself AND your sanity....and I could just scream. You want to quit, but when the pain is always there and ruining your sleep...What else can you do? Its wrong, its unfair and I hate it.

Compassion is greatly appreciated

Night all

I only recently discovered that autoimmune diseases run thru my family. My uncle (dad's little brother) died in 1995 while waiting for a heart transplant. My aunt (a nurse) told me that my uncle's viral infection that caused his heart problem had probably triggered an autoimmune disorder of some sort that caused the heart problems and probably caused the pancreatitis that actually killed him. (his heart was going pretty strong when he died)

My other aunt (dad's little sister) has rheumatoid arthritis.

My dad's 2nd cousin (female cousin) is the only other person I've heard of in my family that has MS. She got her first exacerbation the same week her brother dived headfirst into a lake and broke his neck and became a quad. Their mom had a bad year or two after that. She had to take care of two paralyzed young adult children. My cousin apparently got better after they treated her with the steroids. Too bad they couldnt do anything for her brother. I havent met her yet, but I've met her brother. He's really cool. Funny guy.

On my mom's side of the family, half the people there have food and environmental allergies, which are autoimmune in nature. A few of them have the serious ones that can kill you. Lucky me, I'm allergic to seafood and some penicillin based antibiotics.

I have a feeling that diseases like Fibro, MS, all have something to do with allergies or a disease that somehow triggers the immune system and starts the immune system to attacking our bodies.

I have no way of knowing this is true, it just an opinion that I've been getting from reading about MS and other autoimmune diseases.

Hi There Greenjeans, I guess I just missed you. Hope you're sleeping by now...

I just wanted to let you know that I feel your pain (literally!) I am also undx, started having symptoms 8 years ago. I've been through several neuros, and have heard alot of the same crap ("your symptoms are from stress, maybe you're just more sensitive than others, blah, blah, blah".)

Well, in the past 2 years, I have begun really falling apart. I started feeling crappy during a family trip in April 2006 (overwhelming fatigue, backache, urinary urgency and frequency.) Within a few weeks, I had a large herniated disc in my lower back, plus numerous other strange sx (sudden, severe headaches, dizziness, tightness/heaviness in my chest, and intermitent squeezing feelings -spasms?- in my throat.)

I did PT, was able to avoid back surgery, and began feeling somewhat normal. Then, September 2007, I'm coughing alot from allergies, and, guess what? I have several herniated discs in my neck. I was on round-the-clock narcotics for about 3 weeks due to SEVERE pain in my left arm/hand. At this time, my left thumb became numb, and remains that way today. Oh, and all the other crazy symptoms decide to return in full force.

Again my neurosurgeon set me up for PT (including cervical traction), as well as a series of cervical epidural steroid injections. When my arm pain calms down, the neurosurgeon repeats my brain and cervical MRI due to the seemingly unrelated sx. I've developed. The MRI is the same as last time (a few scattered, nonspecific hyperintensities), but the cervical MRI comes back saying there are 2 lesions, 1 slightly enhancing.

Well, next I'm off to the MS specialist, who doesn't see any lesions on the films I brought. So, I have to have it done again (3rd time in 2 months.) This one comes back saying a cryptic: "There are likely scattered lesions throughout the cervical cord." But, the MS specialist isn't so sure, and doesn't want to start me on MS drugs if it's not definately MS. (I have to agree.)

To make a long story longer (and I think this is turning out to be a book!), I have been in pain 24/7 since September. I have been taking Gabapentin (generic Neurontin) for 3 months. It did take a week or so to feel it start working. I do not feel foggy or sleepy at all. It does NOT take away all the pain, but makes it somewhat more bearable. Now, for the bad news, I, did gained weight on it, like some others have. To be completely honest, this is really getting to me lately. My clothes don't fit me anymore....that is getting depressing.

Okay, (taking a deep breath...) what I'm getting around to is that, although the Gabapentin helps, I have often found myself awake all hours of the night due to pain. I spoke with the MS specialist about this, and I got a prescription for generic Ambien. I was a little confused at first because it's not like I'm not tired...it's just that pain keeps waking me up (and keeping me up.) Well, this little med has been a GODSEND. I don't take it every night because I'm concerned I'll become reliant on it (even though my PCP said it'd be fine even if I took it every night.

Now, of course, this won't help with daytime pain, but getting a full night's sleep makes everything a little better. Maybe you could request a prescription for a sleep aid such as this? Lots of people take them, and I'm quite sure your PCP would let you try it out. I have had no side effects at all from taking it. Also, it's not one of those meds that you have to take for a period of time before it's effective.

This won't solve your pain problem, but it might be a tool you could use to help with you pain management. I felt compelled to write all this because I sensed in you the same frustration and (for lack of a better word) hopelessness that I also suffer with. I will pray that you feel some relief from your pain. :hug:

No great words of wisdom GJ, having never tried Lyrica, but I send you mega hugs and hope you get relief soon.

I feel the same way.
I keep thinking if we ?ed everyone about there childhood we might start seeing a link. I'm not saying like all the autoimmune diseases would be caused by having just mumps as a child but maybe like having mumps and the measles and chicken pocks, etc.
Maybe we were born with a weak immune system and than after getting out 1st illness our bodies slowly started attacking it's self. :confused:



Hay Erin look what I found
http://www.immunesupport.com/library...le.cfm/ID/7938

I even found this,
"Based on a study by the University of Washington of over 1,400 individuals, it was found that those who drank well water on a regular basis during childhood were 10 times more likely to develop fibromyalgia than those who did not. Since many wells contain environmental toxins such as pesticide run-off, we feel there could be a definite link, especially since fibromyalgia seems to be a central nervous system disease."
and,
"Many viruses have been considered and may play a role in CFS including the Epstein-Barr virus (EBV) and Cytomegalovirus (CMV). Human herpes virus 6 is under investigation."

I feel like there are so many puzzle pieces out there about autoimmune diseases and no one putting them all together.

I cant find the link now, but last night I was reading about MS on a website and was really surprised to read that some doctors think that MS comes from having Epstein-Barr (mononucleosis) at the same time as a retrovirus, such as Shingles, is one of the triggers for MS.

Scary thing is, I got mononucleosis in late 1995, I wasnt full blown sick with it until mid-January when my spleen and liver both decided to fight for domination of my abdominal cavity. (they ballooned up and I had to stay in bed to avoid breaking either one of them)

About a month before that, I apparently had Shingles for a few weeks. Gosh, Shingles is PAINFUL! I didnt know what it was, and for some reason, I didnt go to the doctor for it. (probably because of where the little sores showed up. I have a scar that runs across the right side of my....chest... When the sores started to get icky, I was putting washcloths and sanitary napkins in my bra to keep the nasty stuff from the sores leaking out onto my shirts. Ewww!


I only found out within the last year that what I had was Shingles. I know I already had Mononucleosis before the shingles started. I was working in a McDonald's at the time and a girl who worked there was out sick for a month because she had mono. But, she was sick and still working before she actually knew she had mono. Whenever the pop tanks in the store would go out, she could never tell if she got the tanks hooked up right, so she'd draw some pop into a cup, and then hand it to both me and my store manager to taste after she'd tasted it.

Well, both me and the store manager came down with mono... Guess what? The store manager was diagnosed with MS back in 2000 or 2001. Saw her when she was working for a department store. It was her last day at work, she had really bad optic neuritis. She'd been diagnosed about a week or two before and was having a bad exacerbation. She had ON, and her lower body was numb, and she was using a store scooter to get around that day.

It really freaks me out that someone I worked with for 8 years probably developed MS at the same time I did, probably from the same source.

I'd been having problems with vertigo (misdiagnosed as ear infections) since 1997, and every few months I'd wake up with numbness in my hands (thought it was Carpal Tunnel) that would go away by the end of the day.

I havent seen my former manager since that day that I found out she has MS. I'd love to see her again and talk to her about the MS. If anything just to be friends again.

WOW, what a story.
I have shingles and I think I had mono, I was REALLY sick a few years back with what I thought at the time was the flu, I had 104. temp (I have low body temp and if I hit 99. I'm sick, over 100 it's awful) and felt awful for a week and than got a little better but it toke months before I felt OK and I have never been the same since than. Looking back it doesn't seam like the flu now, the only thing I have was temp, body aches, sore throat, cough, shacking and no appetite oh and of course fatigue & headache that I STILL have today. And all this was about 6 years AFTER the fibro DX.

I guess you can say I went down hill from there. It was after this that the numbness started and the slurred speech and memory loss. :(

Ever since I had mono, I have not felt as good as I did before then. I'd never been that sick before.

I had the sore throat, extreme fatigue, a 3 week long migraine, some sort of icky, nasty discolored goo draining from my nose CONSTANTLY (if I laid down to sleep, I'd feel like I was drowning in it), I only slept an hour or two at a time. I had a fever that went above 104 for a few hours one day. The fever was the worst part. That's the only time in my life that I have ever been delirious from fever. My uncle had died right about the time I contracted mono. I think it was the stress of his death that might have lowered my immune system and allowed me to contract mono.

Because of the lack of sleep, when I started to get better from the mono, I would sleep for days. Once I went to get my paycheck that I hadnt picked up for a month one day...I picked it up, went and cashed it, walked out to my car, got in, fell asleep for about an hour...woke up, drove home, and slept for 30hrs.

I never, ever ever want to be that sick again. The tiredness and fatigue I had when I had mono, the MS fatigue hasnt even come close to being as bad as the mono fatigue yet!

My last day working before giving in to being sick with mono, was the day that our McD's store transferred to the new ownership (old owner died because his pharmacy screwed up and gave him the wrong medication. His wife didnt want to run the two stores they had alone, so she sold them both to the most evil McD's owner who ever existed)

I remember the new owner yelling at me to clean the breakroom, and to fix the broken table that was on the floor. (what am I? MacGyver??) I couldnt even lift the table, and he kept yelling at me. Finally the manager stepped in, and told me to do something else. I went up front and was bagging french fries when all of a sudden, I just burst into tears.

I went and hid behind the ice cream machine so customers wouldnt see me, but everyone in the grill area thought that I had just gone mad or something. I was standing there, and another one of the managers asked me what was wrong. I just stood there crying my eyes out and telling her that I had no idea why I was so tired. She decided to send me home, and wouldnt let me come back until I had a doctor's note.

Went to the doctor and the stupid physician's assistant (same moron who told me in 2006 that my numb leg was a sprain, and here, put some heat on it and it'll be better in a few days...moron!) diagnosed it as a sinus infection. I had told her that my aunt (a nurse) and told me that it was mononucleosis and to give me the monospot test. Of course I was ignored. I didnt know enough to insist or complain about it.

Went and picked up the antibiotics she Rx-ed and went home. Took the abx's and promptly had the well-known reaction to the antibiotics that people with mononucleosis get. (confirmed my aunt's diagnosis!)

Went back the next day, told the PA she was an idiot, the doctor came in, and said for them to do the monospot test, and I had an "I TOLD YOU SO!!" moment. (I really hate that PA) Apparently the mono was making me quite grumpy.

I really do believe that mononucleosis is probably one of the big triggers for MS. I'm sure there's probably at least a half dozen different triggers, but I do think that mono is one of the required ingredients for activating whatever body mechanism that sets off the immune system.

If I could turn my "medical bad luck" into good luck, I'd probably be able to win Powerball fairly often.

So GJ, how did it go with your PCP?

sorry to see you are still dealing with this *** time to find a new ***, lyrica helped for a time for me with the nerve pain but it wasnt the right one it has way too many side effects for me to feel comfortable, i must be honest i am losing hope in the med department lately the side effects are pretty drastic on some of theses meds might as well deal with the ms side effect and not dope myself up anymore tan i have to, i hope you get this dam doc situation straighten out real soon jeannie:hug:

Sorry I've not been around...SCHOOL!!!

My PCP said not to get the Lyrica (HE :rolleyes: HIS EYES). Instead I'm going to a new spine doctor. The PCP gave me some sleeping pills to get some sleep. It's been working the past few nights :)

Other than that, same ol' same ol'....

Have a good weekend my friends!
:hug::hug::hug::hug::hug::hug:

FRANK: Yes, I was really concerned about the side effects...and my PCP echoed my opinion. He said it can be good for the right reason, but it's on the top of his list as a FINAL SOLUTION. I like my PCP :D