Pain Clinic

[WAM]

Welp. Went to my Neuro the other day. Reported that the RLS was pretty much undercontrol with Klonopin and a couple hunnerd mgs of Lyrica but the pain was overwhelming. Leg and feet pain are just killing me.
I layed down this afternoon and it felt like someone had driven a RR Spike between my big toe and middle toe down into the ball of my foot. My feet were on fire all day. My legs from the calve to the hamstring were very uncomfortable. Now tonight, i have the sensation that hair is wrapped around my big toe and second toe. Not pain, just flipping weird sensation that hair or really soft thread is loosely wrapped around them. How weird. I've been tested for Neuropathy three times, two different types of tests. and every time they've said no. So anyway...I asked him if there were any kind of maybe time release pills I could take...anything like that he said "NOPE, not from me anyway". And he gave me a referral to a pain clinic. I told him to make sure it was a Dr. I could understand, one who spoke English. Because the last pain clinic I went to for an epidural, didn't go so well as far as communication with the Dr.

My question, is that a good idea? for me to go to a pain clinic?

I'm still going to see Dr. Marcotte....maybe I'll wait to see what he says.

Anyway...anyone been to a pain clinic?

[ViewsAskew]

I've not been...Susan goes to one, I think, for her RLS meds. Hopefully her experience can give you some idea of what to expect.

I sure hope can find the right treatment for this and soon.

[Scarlett46]

Now tonight, i have the sensation that hair is wrapped around my big toe and second toe. Not pain, just flipping weird sensation that hair or really soft thread is loosely wrapped around them. How weird.

I get that same sensation sometimes. It's really odd! I keep looking, and digging, and there's nothing there! Sure feels like it though... But I never related it to RLS.

I haven't been to a pain clinic, so I'm sorry, I can't offer any advice or insight on that. But if you're having chronic pain, and your regular doctor can't help... seems like it would be worth a try - especially if the doc you trust is advising it. Good luck!

[becat]

WAM, I'm sorry.

I do know your pain though.

Why not a pain clinic? If you can get an educated doc or one willing to learn, why not?

LOL, the english thing. SO UN PC, but true. Helpful to understand the doc speaking to you.

Yup, neuro don't like pain meds.....been proven too many times here on this board.
And those of us with pain, need true management of that.

Be careful that they don't want to try shots in your back or things like that.
This one is simple, straight pain meds and they don't need to bump it up or way out with fancy gadgets or things like the shots.

So go in straight and let them know that pain is the issue and it needs to be dealt with, period. You've tried hard to follow the neuro and his wishes and it's not getting better for you, so I'm glad he was honest.

This might be a scary step for you, but be brave my brother and know that with pain management a new life could be at hand. Give you back some choices in your life.

Not one soul needs to live in this day and age with pain.

Certainly not our beloved WAM.

Hugs brother,
Lynne

[Sojourner]

Wonder if it's a form of "toe paresthesia?" Google it for more info.

M.

[ViewsAskew]

Sojourner, I was also wondering if it's a parasthesia of some kind. I get them, but in other body parts. I think a LOT of us get some type of parasthesia or another.

[SquirmingSusan]

Yes, as Ann said, I do go to a pain clinic. I have a bit of a love-hate relationship with the place, but in general they treat me well and they do manage my pain. What I hate is that it seems like they are an extension of the DEA, and I have to pee in a jar for them every 3-6 months. It feels like I'm a criminal because I have chronic pain.

On the other hand, they take pain seriously and actually treat it. It has taken a bit of educating to get them to understand that RLS can be painful, but lately they really do seem to have a pretty good picture of what RLS can do to people. And they spend a full hour with me each visit. They also have biofeedback classes for relaxation (I can't do that - makes my RLS go nuts when I relax!) and a psychologist on the staff. My doctor sent me to physical therapy with Alpha Stim which has cut down my pain dramatically. They are totally cutting edge with their treatment of pain, and have all the fancy procedures available if you need them, but aren't afraid to just prescribe the pain meds if you don't need the other stuff.

Another benefit of the pain clinic is that if I want Synvisc for my old, injured knees, my pain doctor can do that procedure, and I hope to be getting that soon. I'm also having back pain issues lately, and I can just call them up and they'll work with me.

However, they really don't treat sleep issues, so I have to go to another doctor for the sleeping pills, and to treat the PLMD, and the daytime sleepiness. But the last doctor I saw a few weeks ago, looked at me and saw how utterly exhausted and nonfunctional I was, and asked my why no one had prescribed Provigil for me. I told her that I had begged other doctors for it and they had said no, and she wrote me a prescription with refills. Wow, has that stuff given me back my life!

I do understand the language issue. My doctor is foreign, and it was a bit difficult at first to get past the language barrier. But he's really competent and really does seem to care about me, so it works. And actually I rarely see him anyway. He gets booked up fast, so I see the nurse practitioners or the other doctors.

WAM, you have nothing to worry about if it's a good pain clinic. You are in pain, right? Why not get competent treatment for it.

[WAM]

Wonder if it's a form of "toe paresthesia?" Google it for more info.

M.

M, thanks for that info. The more I read it the more I go...yep.
The thing that caught my eye was it said it could be caused by nerve damage from "Entrapment". Now I'm not sure was entrapment is but I gotta tell you every day I put my foot into that boot with the steel toes and steel or plastic plate protecting the toes and top of my foot...I can relate to "entrapment".

I'm gonna research it more and see if I can find anything helpful out.

I've been to an Orthopedic Dr. and Neurologist and nobody ever said anything about paresthesia. Never heard of it before. Thanks again.

Susan... you have to pee in a jar? Seriously? I don't get it. Why?

randy

[ViewsAskew]

Huh...entrapment...my first thought was like a trapped nerve, which could be also related to pain. But, that's some dumb first thought reaction, based on NO real knowledge...

Quick story. Or series of stories.
------------------------------------------------
15 years ago I had a hip injury. Doctor A said a major tendon was too loose and told me to tighten it. Doctor B said it was too tight and to loosen it. I don't know to this day which one was right. I inadvertantly healed it by learning Tai Chi. I don't know if it's tighter or looser now, but it doesn't hurt anymore after 3 years of continual pain.

--------------------------------------------------------
10 years ago I had lower abdominal pain, right side, accompanied by intestinal symptoms. It would come and go. First, my GP thought it might be a food intolerance issue. After is continued to get worse, she determined it was probably Chrohn's disease based on everything that was happening and set up an appointment with a gastro doc. A week before my appointment, the pain accelerated and didn't stop. Off to the emergency room at midnight on Sunday. Nothing. The exams, the tests showed elevated white count, but nothing else. I didn't have the other symptoms of appendicitis. On Monday, the x-ray showed nothing. Every day for three days, 3-5 residents would come in and try to figure it out. My surgeon saw me. My PCP say me. On day 3, they were supposed to do a certain test, but no one from radiography came to get me. At 4 PM, the surgeon came in and was annoyed they hadn't done it, so he wheeled me down himself and watched while they did it. The next I knew, everyone was running and I was being prepped for surgery. At midnight, he closed. It was chronic appendicitis and the appendix had perforated causing major infection (the high white count) - they had to remove a lot of what's supposed to be there. Ten days later, I was still alive, and still in the hospital getting IV antibiotics because of the infection.

------------------------------------------------------
About 8 years ago my knee started to hurt at mile 23 of a 30 mile ride, so I iced it and laid off awhile. After a week of RICE, I rode again. It started to hurt at about 8 miles. Again, RICE. The next ride it hurt at 2 miles.

Off to the doctor. It's an overuse injury he says, a cortisone shot will take care of it and all will be well. He does some xrays (which I later learn are pointless with this type of injury) and says NOTHING is wrong at all that rest won't resolve.

Three months later, I still can't ride without pain and it hurts at other times now, too, (like any time I use my quads at all) so off to another doc. He says (without ANY other exam than a five minute prod of the knee), hmmm, you have a degenerative knee problem that will only get worse until you can't walk. No treatment exists. You'll eventually need a knee replacement.

WHAT???????

I sulked for awhile and then went to the next guy. He says that it's torn cartilage. Off to an MRI or whatever they do in those situations. He looks at it and shows me where he sees this floating cartilage. Yep, surgery is the only option.

Oh. So, I went from no problem to an unfixable problem to a fixable problem. Well, seems like surgery it is.

When I got out of surgery, the doc came in to talk to me. How's the cartilage, I ask. Oh, fine he says. It wasn't torn.

HUH??????

Nope, he says. You have chondramalacia, a softening of the knee cap. It's usually controlled with physical therapy, but the surgery was helpful because I could clean up the knee cap. He continues to tell me that this is a lifelong condition, but with physical therapy, I'll be fine.

----------------------------------------------------------------------
No matter what happens, no doctor is perfect and they're not even likely to be right the majority of the time, at least based on my experience! Diagnosing things must be terribly hard and no matter what any doc tells you, if it's still not right or doesn't fit with what you know or need, find someone else. Sure, sometime we don't want to here we have something terribly wrong, but we do want to hear the SOMETHING is wrong when we have chronic pain!

Be strong, stay the course. Fight for the treatment you deserve. Tell them that you just can't live this way, that you need them to help you. And, when that doesn't work, try again with someone else. You might not be able to ever have a completely pain free life, but right now you don't even know what is causing all of this. Is it RLS? Or RLS with something? Or RLS caused by something?

Well, that got a lot longer than I intended....I hope it made sense.

[tazzer]

I haven't been to a pain clinic, but I know that some people have a hard time if RLS is classified as a sleep disorder, with their dr and with their ins. My neuro has my RLS classified under neuroligical with Parkinsons. No probs from ins. As far as the dr not prescribing a time release drug, my thought is they should have nails driven into their legs everyday and see if they can deal with it without some pain relief. My hubby went to a pain mgt clinic for his back, and they did prescribe him some meds. I don't think it would hurt to try randy. (no pun intended) you described it feeling as if a thread was around your toe....i have had that....i thought i was going nuts...cuz nothing was there. my pain is really getting worse in my arms and my hands. this just really sux! Hope u feel better wammo

[SquirmingSusan]

Susan... you have to pee in a jar? Seriously? I don't get it. Why?

randy

It's a DEA thing. They have to make sure that the patients aren't using street drugs, and probably that the patients ARE taking the prescribed narcotics and not selling them on the street. It's rather invasive, and probably unconstitutional, but I get my meds and I'm not suffering so I put up with it.

[Rubyslipper]

I'm so sorry that all of you have had pain experiences. Then to have to juggle trying to find a way to deal with it, a doctor that will prescribe and all the rest. I do not understand why it should be so difficult to get help. Everyone in authority seems to be so afraid to do anything or even to listen. We know our own bodies.

I agree Susan, that is demoralizing and you shouldn't have to be put through that just to get medicine. guess you have to weigh the outcome to see if it's worth it and in this case it is.

WAM, try the pain clinic. I know you have been in pain for a long time. Steel toed boots and working on concrete have surely taken a toll on your feet and legs. I truly hope they can help you.

It used to be said that RLS wasn't painful but at least there has been some change in that thinking. But even if it isn't the RLS, so many still have pain of one sort or another. Fibro, unexplained, so many more.

this is off the subject but in researching the internet (yes, you do have to be careful with the info you find there) I'm finding that fibromyalgia symptoms are really close to MS. That's scary. I have found a good support group for fibro not too far from here. There are so many overlaps between different diseases and disorders. No wonder we are all confused!