the point of the ridiculous. I've fibro, but that is not all that is going on here, it can't be!!
My legs (and other body parts at times) sting, burn, cramp, and other assorted weird pains. My doc is a great guy, and has worked with me the entire time. Yet, I need to know, what type of specialist does one see for these odd types of pain? A Neurologist? This pain I describe is the worst it has ever been, and quite frankly, I CAN'T take it anymore!! I am allowed to use medical MJ if need be, but I HATE the stuff. I'm on oxycodone, three times a day and can take a fourth if needed, also Gabapentin, 300mgs four times a day and a new muscle relaxer, Zanaflex four times a day. IF ANYONE has any idea's, PLEASE, elucidate me!!
This is seriously making my quality of life different, and I don't mean better!
I exercise daily, I eat right (but I do forget to eat which may be causing some tummy issues with the Gabapentin) I am pretty healthy other than all of this garbage, and there is more, I just don't want to overload you all. SO, Who do I see? A neurologist, a rheumatologist, the vet, or Hannibal Lecter, Jack Kevorkian?
Thank you all for reading this rambling Q, (can't think straight with the pain increase of late)!!
Lara
Anonymous I do apologize for asking so many Q's in two days gang! I've a BIG problem, my pain has gotten to?
- Posted:
- 28 Apr 2012 by Anonymous
- Topics:
- neurologic disorder, pain, fibromyalgia, doctor, burning, cramp
Added 28 Apr 2012:
Durrrrr (Irish for Duhhh), I forgot to add that last night, as an ancillary benefit, four toes on one foor curled backwards several times, and it hurt so badly, I had to grab my toes and bend them back the right way! Does anyone else get toe cramps like this?
Responses (25)
smileyhappy
VicBoy
kaismama28 Apr 2012
Good heavens Lara. I know we tend to lump all the pain we get in with the fibro, and so do our docs lots of time. But when its so different, like this, you need to be sure its not something else and you need it taken care of. I would say see your primary who could run tests for other causes. He would probably be the easiest one to get an appointment too. There are a few things that can cause this, that aren't all that bad, like low magnesium. And he can give you something to help until you know something. Then go to whichever specialist seems indicated after the findings. Do you have Chronic myofascial pain? I get pains like that, and I say they are fibro, but really they are from the CMP. And I don't have them for several days at a time, my boyfriend called them pains of the day. lol... I up my gabapentin on those days and it really helps. I know you're not a fan of that drug. If you decide on kevorkian you'll have to find a good medium, lololol... let us know how you are. I'll be thinking of you.
pledgeAnonymous 28 Apr 2012
Dear, dear sweet girl! You didn't tell me about the toe curling last night! Are you on supplements? I know you are on some, but you need to take 1000mg of vitamin C & also magnesium for the cramps. If I forget, I get cramps in the middle of the night. What a nightmare that gets to be! It gets me in my calf muscles too. Even if you eat right, it doesn't mean you are getting the right amount of each vitamin. I take Citracal with 1200mg of calcium, zinc, & magnesium too for my bones, & they all help with this problem too. They all help with bone, muscle, & nerve endings. Give it a try & see if it helps. You didn't mention the RA you have either. That is a very painful disease. As far as all this leg pain, I would see a neurologist, & see if you might have a back problem you are not aware of. My lower back as you know is a mess, & have had this horrible stinging burning pain for years. Even the oxycodone doesn't help that for me.
Anonymous 28 Apr 2012
Hey Mar, yes, it's time for a new MRI. I do have a couple of blown discs in my neck, so perhaps that is it. I will make an appointment with the neuro doc I saw last summer. He is one of the best in my state, and has taken care of D's whole family.
xoxo
Anonymous 28 Apr 2012
Mary of the many numbers (lol), just emailed you gurl.
I am in denial about RA, and I plan on staying that way. I REFUSE to have RA!! And that's that!!
Love you!!
mik93428 Apr 2012
Hi Sweet, im sorry your having all these issues! My sister has all the problems that your describing and she has to see a Rheumatologist and they claim is because of the 2 different types of arthritis that she has, not saying you have the same thing she has but they seem to think is all because of her arthritis and yes your right, the pain is unbareable for her! It sucks that you need to go back on the pain meds because i know that you had quit them cold turkey some time ago and now it sounds like you need to be on them as well as the other meds.. I would start off with a good Rheumatologist and see what they determine with testing, maybe you may need to see a Neurologist.. I hate to hear you feeling this way and i hope you get this under control.. plz keep me up dated my friend.. God Bless my friend! Mickey..
P.S. i hope you get this because i have posted questions and have sent msgs to members several times and never heard from them., i dont know what going on with the site..
Anonymous 28 Apr 2012
Mik, did you get my comment to you yesterday before they pulled Lara's question? I told you we are friends, & PQ me with any question, & if i can't answer it I will pass it on to someone who can! We'll beat the system if we have to... Mary
Anonymous 29 Apr 2012
MIK!! I haven't seen you in forever!! I thought you left the site. I'm very happy to see your sunny chicago face!
I have a rheum doc, but she is very bored with her job, the last visit she just kept yawning in my face and had a used, sodden (sorry gang) kleenex in her hand, she had a cold. It feels as if she is doing me a big huge favour just being there at my appointment. She was an understudy of one of the bestest rhuem docs in my state, but she is underwhelming me. Think I will find another!
Thank you Mik!! (and yes, I didn't want to go back on pain meds, but to have any quality of life I will take them, never abused them the first time when I went cold turkey... GOOD MEMORY MIK!!)
mik934
HopeDespite
MS224EVERAnonymous 28 Apr 2012
Hi MS22,
Yup, I must agree, I shall make an appointment on Monday for my neurologist. Never tried pickle juice gurl, and I fear I may projectile puke it across the room if I drank the brine!! But I so appreciate the thought,
Lara
x
505eva
28 Apr 2012
I really don't have an answer for you. With all the meds you take, you shouldn't be in such pain. I hate to say it, but the curling toe thing does sound like RA. My sister has it and that was her first clue. I hope the neurologist can help! Does the med mj help at all?
Anonymous 28 Apr 2012
I know this might sound completely off the wall but, when I get somewhat like you so eloquently described, I take me some extra potassium. Makes my toes uncurl anywho.
Just a thought from a somewhat nutty crazy person. Let me reread your post to see what other ideas I can come up with ... brb... I'm not sure Hannibal Lecture is the person you need to see unless you want him to eat away your leg situation, but a neurologist may be the way to go. UNLESS ..if
the problem is with the new muscle relaxer pill... Zanaflex. Sounds yick to me. Hope I gave you food for thought.
Love always my wee leprechaun,
Hippie Chickie that has lost her Mind
Xoxo
Anonymous 28 Apr 2012
Well Laura, if you've lost your mind, I most assuredly have lost mine because ye are making perfect sense to me!!
I take potassium, a multi, magnesium, RX vit D, flaxseed oil, acidopholus and folic acid (not THE acid of your generation!!) so I think I'm pretty well covered with supplements Laura, thank you my sweet hippie!!
Anonymous 28 Apr 2012
Lara, no vit.C? You need the vit. C! It really helps with the cramps! xoxo
meyati
franklin8...28 Apr 2012
Lara, I agree with several of the other responders you probably need to see a neurologist. Your pain could very well be from a lack of some vitamin or mineral, but it is affecting your nerve responses. I also think the medical mary jane could be a great help. Grass works on neurological pathways and is very good at decreasing the pain thresh holds. I don't know if you live in a state where it is legal but in this state it is legal for medical purposes and has been just another tool in helping people with pain, seizures, muscle spasms etc. Good Luck, it really stinks when anyone has to experience pain.
Anonymous 29 Apr 2012
Hi franklin,
Yes, I live in Michigan, (via Ireland) and tis legal here. My doc is all for it, but MJ does NOTHING good for me, believe me gurl, I wish it did!! I just don't like the feeling of being a bit out of control, and feel quite self conscious after imbibing in the weed. But I'm pro-weed for people who need it!
I've got to tell a wee story here, and if anyone recognizes me, keep your gob shut! I bought some medical pot, 3 joints, from a relatives friend, who sells it legally. But also maybe not so legally at times? Anyway, this guy is in his late twenties (I'm 37) but have NEVER purchased any type of street drug.
This eejit WROTE A CHECK FOR MJ!! I'm still being teased by everyone of my generation in my husband's family and my family!! I wrote a check for weed! The guy who I bought it from still tells people, like I was at Nieman Marcus picking out a gift!! Oh Lord. Don't write a check if you are going to buy weed, medical or NOT!
kaismama
17 May 2012
hope you didn't write what it was for on the memo, lol
Anonymous 
endlessPred28 Apr 2012
Hi Lara, I know that leg cramping and curling of toes very well. It is always about not enough calcium for me. If I forget to take 1200mg per day for two days, I can wake up with excruciating cramps. Been that way my whole life. Maybe you over looked it but I did not see it listed in your supplements list. My doc also put me on prescription Vit D of50000 units per day, then per week, and finally with separate supplement and calcium. Gotta have food rich with calcium, milk, broccoli, and such, for Vit D to work when you take it.I also take 3 tablets of folic acid per day. When in pain it is increased to five per day. My sisters neurologist got me going on the five. My Rheumy started me on 3.
Anonymous 29 Apr 2012
Hi Karen,
You have brought up some great points! One being the calcium, no, I don't take it and keep forgetting to buy it. I don't use dairy products (once in a while one slice of pizza) because they cause unpleasant tummy problems for me, but I eat loads of brocolli, yet not enough to make up for no dairy.
The neuro doc appointment will probably be three months away (he is so popular, damnit!!) so, I feel like I've just got to something to mitigate this pain!
I know tis not smart to be changing things without a doc's OK, so I will see my GP who prescribes everything I take anyway, and let him know about the calcium I AM PURCHASING TODAY!! Great suggestion!
Also, may I ask how much calcium you take? How many micgrograms of folic acid do you take?
endlessPred
29 Apr 2012
Hello. You are welcome. I take 1200 mg of calcium with vitamin D. The two have to be together or the calcium does not metabolize. Best if taken with milk, ice cream, yogurt. However food helps like the broccoli... I take the brand Caltrate because they taste better than Tums to me and dissolve quickly. I find the smaller tablets are too hard and don't always dissolve. Flushing it down the toilet is not my idea of a supplement.
folic Acid was prescribed for me due to mouth sores. Raw inside of mouth. Anyone suffering from those can be helped with that. I get a prescription and fill it at Target. They have a cheap rate for it. Medicare does not cover supplements. Taking 3 per day of 1 mg, 2 in am and 1 pm. When in a lot of pain, 5 per day. My sister was told by her Neuro to take five because studies shows it helps mitigate pain. She has osteoarthritis. Works for me, too.
oxypanaAnonymous 29 Apr 2012
Thank you Lori, that is just what I'm going to do!! This type of pain is called 'nueropthy'? I didn't even know it HAD a name, thank you for educating me!! Putting a name to it will help greatly while researching this sh*te!! I wouldn't wish this on anyone and I feel badly for you, you suffer with this as well.
Lara
Anonymous 29 Apr 2012
That is neuropathy my dear girl. Don't forget the "a" in your research!
oxypana28 Apr 2012
Hey Sweet Lara,
Sounds like your having a potassium issue. I get like that at night sometimes and it feels like I have RLS. If I eat a banana, it knocks it out in a heartbeat. That's when I know Im not doing like I should. Try keeping some around and see if it helps. When my legs decide to go bouncing around without me, I know my potassium is low. I hope this might help, love. Take care of yourself or else who's gonna be here to fuss at me when I mess up? :0)
In peace,
Tee
bumblebee90
Lisa0129 Apr 2012
Dear Lara,
I have nothing useful to add in the face of all these other great suggestions other than to let you know how very sorry I am for the additional pain you're going through and that you'll definitely be added to my prayers. Your sense of humor in the face of all this is wonderful, try not to lose it.
Perhaps some massage therapy or acupuncture could help alleviate some of your symptoms. If all else fails, a good witch doctor might be useful...
Feel better soon and feel free to come vent with me if ever you need to.
Lisa
Anonymous 29 Apr 2012
@Ruthiegurl, I just love you!!
@Lisa, you are right, I've been meaning to do the accupuncture thang, but haven't made an appointment yet AND there is an eastern medicine and massage (real massage, not "Me love you long time, G.I.") place right next door to my doc's office, durrrrrrrrr!! I'm going in there this week!! Thank you for reminding me, and I shall report back to all pain groups if it helps!
Lara
xx
NewYorkGuy44
3 May 2012
Sorry we all can relate/ I too take oxycodone 30 mg 4 x aday pluas gababentin 300 mg 2x aday, and naprosyn, and zanaflex. I think I might have stated this earlier, but maybe you should try Lyrica for your nerve pain, it didn't work for me, but it might work for you. Or even Cymbalta. Another thing as far as the oxycodone, i take that as a breakthru pain med, and use opana er for round the clock. maybe you should ask your dr for a stronger medication? IDK just an Idea, Hope you feel better.
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