Help!
 

This is not....oh here he goes again post, but I actually feel like I'm possessed with a demon. I just don't know where to turn or what to do. I am so overwhelmed. I'm driving to work, and I get a burning in my left big toe. This is not where I had the "neuroma" removed on my left foot. I continue to drive, and I get a sharp pain in my left groin. I adjust my sitting and that pain goes away. The burning stops in the big toe, and I have been taking ibuprofen for my "bad back" the past few days. I believe it is SI joint dysfunction. The pain is settling down there, but I've had back trouble for years. No bulging disks...some stenosis, but the SI joint has been problematic for years. I just feel so lost and alone with this pain. Having a spouse is almost worse, because I just get tired of being in a crappy mood with her. It wears on her, and I know it. It is difficult to keep a smiling face. I would truly love to know what I really have. PN...referred pain from my back....some other disease. It is not fun.

Have you considered a pain specialist?
 

I'm not sure if I remember jatatak, have you seen someone specializing in just pain? And I know this sounds silly, but do you sit on a wallet? Sitting on a wallet for extended periods can cause back and hip pain.

Billye

I'm so sorry you feel so alone. I can relate to that part as my pain hits me at night. And only at night. So there I am trying to go to sleep and you know when you're in bed with your eyes closed it seems all your brain can do is focus on the pain making it that much worse.

A pain specialist might be a good idea. I wonder how much they can help without a definitive diagnosis... Or does that not really matter?

As Silverlady said, the wallet can cause problems. It creates a bulge on a pressure point. Sort of like sitting on a pingpong ball all the time as well as throwing the back and hip out of proper alignment. Sounds too simple but it's really not.

Wonder if an epidural would help any with this? The pain I had in that area hurt like the devil, but the epidural was most effective and got rid of it pretty quickly.

With nerve involvement, it is not always easy to get a diagnosis. I have been struggling with this for quite some time. Yesterday, I FINALLY saw another Rheumatologist who at least acts interested in helping with my problems...

I know what you mean about being in a crappy mood though. It is a struggle to stay happy-go-lucky... On the other side of this screen sits a witch a lot of the time...

Cathie

Hi Jack, didn't i read something in one of your posts that your doc wanted you to sign a paper to be able to give you more stronger meds ? might take a few trials, tiltering up and down, adding subtracting and all that stuff but hopefully at least they should be able to lower the pain to some degree that might in turn help the frustration of it all, which of course is not helping it at all.
good luck
Brian :)

Jack
 

Billye was not silly about the wallet. We would be in the car and my
husband would holler out with exactly what you said. His Dr. said get
that wallet out of your pocket. Granted it was just jammed with so
much stuff. He finally emptied it out,most to my purse. But the pain
did go away. Wow i really wish this would solve that darn pain problem
of yours,i know it's so hard,and upsetting.

And yes J, my pain is worst at night. Lately i have fallen asleep for a hr.
and wake up in such pain,i just keep thinking i have to go somewhere
and fast. Probably away from the pain,i don't know but it kinda scares you.

Cathie Bob is getting a epd. in 2 days,they do help,well for me they do.
Jack have you tried this, and take food or milk with that Ivuprobin,you
don't want a ulcer. Have you read that post A cold day in hell. I can
relate to some of it. Your wife may not understand the pain,but i'm
sure she loves you. After all read Cathies play.:hug: all Sue

We search and search for answers...
 

They are probably US and IN or OF US!

Sue good luck with the epi's...they either work or not...it's a crap shoot isn't it?

Jack, well, all I can say is that if it were me...with pain to and into the groin...I would seriously re-think some spinal issues...not chiropractic...unless you can find a Chiro/Neurologist... Don't know about you, they just aren't in my neighborhood. And, I would only travel to someone IF and only IF the docs that I really respect and trust say...OK..

Could you clear up something for me tho? 'SI Joint Dysfunction?' I'm sort of in the dark about the 'SI' part..

Hope this helps! - j

Jakatak,

Listen to Billye. She's wise beyond her years.

Since dealing with sciatica and piriformis syndrome (intense, deep, and persistent pain in the butt) I always keep the wallet and PDA in my front pockets. Wallets press directly on the sciatic nerve and piriformis muscles, and tilt the pelvis sideways for extended periods of time. Your wallet may not be the main cause of your problems, but moving that lump from under your butt can't hurt and may in time allow the problem to clear up.

I agree
 

She is wise and i have been talking to Bob (the man my mom left me in her
will) about putting his wallet in his front pocket. i'm going to show him these
when he wonders up tomorow. Thanks again Billye

David,
Strong magnets helped my brother that was in real terrible pain caused by Sciatica [bad lower spine], he use to walk like he had a wooden leg, now you wouldn't know anything was wrong with him.
If i can help PM me.

SI
 

"SI"sacroilliac" the liagmentous juncture or 'joint' between the sacrum and illiac bones of the pelvis.

For the mental part and not just for you but for others have you thought about a therapist. I have been in therapy for 12 years on and off for other issues. I will say it helps to feel less alone and work on coping mechanisms.

Thanks
 

For all of the responses. The unfortunate aspect of my job leads me to deal directly with psychiatrists, psychologists and therapists on a pretty regular basis. I remember after suffering a panic attack several years ago, I went to the emergency room...this was before I was placed on SSRI's and went to a treatment group for depression/anxiety.....the clinical social worker was to evaluate my condition and determine what needed to be done. Well, after an hour of conversation, she thanked me for the advice I gave her on her dysfunctional marriage, and would take the steps I recommended in order to begin improving her lot in life. So much for an invervention. I, obviously have a difficult time, not only finding someone that I entrust with my mental health, I also work in an agency that makes it even more difficult to find someone that isn't connected to our department in some way. I am concerned, also, about signing a contract with my local HMO doctor for narcotics. Since this HMO is provided to our unit with our contract. The ebb and flow of my foot pain is so exasperating. I will be on Lyrica for a couple days and seem to notice an improvement, only to find that my feet will than begin to ache again. I will be off the meds, and doing okay, and blam!, the pain returns. This, along with my inner groin pain that is lancing in nature, and goes away as soon as I shift my body. Oh brother!

Jack
have you ever been checked for a hernia re the groin pain?

I ask becasue my husband experienced intense, lancelike pain there that also changed with movement, and they discovered he was herniated and needed surgery to repair it

just a thought as I read your symptoms that it reminded me of what he had

uhoh!!
 

I am not sure I understand this. Did you say you will be off and on the Lyrica? Lyrica is one of the classes of drugs that has to be taken consistantly. You must keep a constant level of this in your blood for it to work. Are you just taking it in an on and off dosage?

Billye

Regretably
 

I am.....I take it for a while and being type A.....not seeing any change in symptoms...I will think about the side effects...weight gain...and the fact that it is an anti-seizure med....and quit taking it. I'm just so leery about taking a med that hasn't conclusively pinpointed my problem.
As far as the hernia which was mentioned....a gp did suggest that it might be that. I don't recall doing any kind of lifting that created a strain or any pain. I also am not tender in that area, and it just doesn't seem logical...but what does these days.

jakatak--
 

--you may be inadvertantly contributing to your pain rebounding by going up and down on the Lyrica dosage.

All of the anti-epileptic drugs, such as Lyrica, should be titrated up and down somewhat slowly, so that oen does not get rebound effects due to upregulation. As Billye says, these drugs need to be at a farily constant level to work effectively (if they will work for an individual); suddenly dropping the dose can result in fairly significant symptom uptick as the body, which has upregulated its signalling rate due to the presence of the med, now has no med, or significantly reduced amounts of it, to react against. It's pretty much the same mechanism that happens with a lot of other drugs, even caffeine--stopping them or greatly reducing them suddenly tends to cause symptom recapitulation.

If you don't think the Lyrica is helping, you would probably want to work with your physicans to work out a schedule of gradual reduction, to give the body time to react more smoothly and to prevent rebound symptoms.

I know from my own experience, as I've gradually been reducing my Gabapentin, that if I make too big a drop and/or go off schedule for several hours I will experience "flares". I am currently at 1600mg/day, down from 2400/mg day ten months ago; I am searching for the minimal level to keep symptoms tolerable, but when I do drop, I drop 100mg at a time and observe my reaction to that level for days.

Totally agree
 

I totally agree with Glenn. You are making yourself worse. If you decide to totally stop do it gradually or make up your mind to take them. Stopping gradually gives your nervous system time to learn to do without the med. Work with your doctor in doing this. If you don't want this med, try another one, but really give it a try before you decide it doesn't work.

Billye

Yes
 

I have to agree as well. Jack i had to be downtown today and wondered
into the Birkenstock Shop and they did have Dress shoes. You may
want to look at these for Court. They cost, but in MN. you would
have more places to look. Being type A can be exhausting,as you well
know. Nice of you to help out the therapist though,i love that,bad
for you but may change her like forever. My Psychiatrist for the last
5 yrs. was going through divorce and had 6 young sons,at first i found
myself patting her on the back,saying it's going to be ok!! :)
And it was,and i would hate to loose her. I'm glad you posted again,and
try the meds.a little at a time but not off and on,defeats the purpose.
:hug: :hug: Sue

Absolutely, be carefull Jack, you shouldn't just stop anti seizure meds without your doctors instructions.
Have you tried Tramadol slow release ? i think the normal limit is 200mg x 2 per day, we don't all react the same to drugs, but i found it very good without any noticeable side affects.
Sometimes it takes a while before the drug will work properly, side affects come with all drugs to some degree, my opinion is that if the side affects out weigh the benefits then its time to look for another, but under a doctors guidance.

It's amazing
 

How doctors just had out pills like candy, and don't give a rip as to how well one does. One doctor tells me to take 2400mgs a nite of neurontin...the PN doc says I should incorporate that with his little Lyrica pill....75mgs 3 times a day. I look in my medicine cabinet, and it looks like a pharmacy. It is absurd! I'm going to stay on the Lyrica....I don't like the drugged out feeling of neurontin....I never have. I have reduced the 2400 to 1600 a nite for the past couple weeks. I will continue on that until my next PN doc appointment. I never really gave the Lyrica a chance to work...maybe it was my denial of...if the Lyrica works....than that confirms that I do have PN. I just read posts of people not being able to wear shoes because of the leather irritating their feet....or the pain getting worse at nite....my "pain" is only on the bottom of my toes....only the tightness of shoes makes my feet worse. I can wear sandals all day long...Birks are great on my feet. I have trouble with tennis shoes with socks, because it seems to suffocate my feet.....oh well.....I wish I was 20 years younger again...the only thing I took was an occasional aspirin when I was running marathons and biking, playing hockey, tennis, etc. Oh well!

Me tooo
 

I miss ice skating and hockey,touck football,golf,but at my age and with
my pain i find myself loving a good book,watching a baby smile,looking
at a puppy barking for the first time,it's so funny when they scare them
selves. No i expected to travel more,go rock climbing with my kids.
Now i will be able still to see my grandson grow,and love it. You got
to find something to make you smile at least once a day. Get a camera
make a dark room,and set out to be famous. Or do what Mel's Alan did
be a champ,at the gym. Oh hug you wife and watch her smile and the
rest is up to youse. ha :hug: :hug: Sue

Hey Jack:

If you are wearing men's (dress) socks that even squeeze your feet slightly, this may contribute to pain in touchy sensory nerves. I looked at my husband's feet in his dress socks and they seem to squeeze the toes together a bit.

Cathie

Okay
 

I will take suggestions on my appearance at work. I do need to, occasionally dress appropriately for court.