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)!!
I do apologize for asking so many Q's in two days gang! I've a BIG problem, my pain has gotten to?
- 28 Apr 2012 by Anonymous
- 16 Jul 2012
- neurologic disorder, pain, fibromyalgia, doctor, burning, cramp
the point of the ridiculous. I've fibro, but that is not all that is going on here, it can't be!!
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?
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.
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.
Mayber a MRI of the spine is in order? It would be a good starting place at least to rule out a disc problem. Many don't have back pain, but do have the leg pain like you describe. Be sure to keep all your docs up to date with the new info too. That's what I would do anyway. I am sure others will have other opinions too, but you describe my leg pain to a T, & it comes from my messed up lower back. Even your regular doc can order an MRI of the spine, & then refer you to a neruologist or neruosurgeon if necessary. That's not fibro pain you are describing. I am the Queen of fibro as you well know, & it doesn't effect you like that. I know how bad you are feeling, & want only the best of diagnosis for you & best of care... Mary
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..
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
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.
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.
I would suggest you change nothing until you see the neurologist. My docs always tell me that clouds the picture and creates a new variable. Then they end up saying they don't know. Because they don't. Was it the drug or does an imbalance occur on the drug or what? You won't know.
By the way. With extreme pain you ought to head to the hospital. It affects the heart and blood pressure and can put you in danger you won't even notice. Think about it, please. Karen
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)
Hey Sweetie, Sorry I am just now answering this. I have been having some pretty bad pain issues of my own. I got off the Fentanyl patch and on to a pill form of pain med. and I've been on the couch all day. I think I am just feeling a little bad for a couple of days getting off the patch. I did talk with a friend today about what kind of doctor I should go to myself with all my issues, and we both agreed to a Neurologist. I think that might be your best bet too. I know I have Fibro. too and it just plain sucks. I hate it. I have the cramping at night too, and got a lot of good information from reading everyones posts. I am sooo sorry you are going through this. I sat on the couch with the hubby tonight and just cried... due to everything wrong with me. It just get's overwhelming. I know how you feel. And I understand not thinking straight when you're in pain. I just hate it sometimes when it's very obvious that I'm hurting and I'm a not in a very good mood, and my hubby will ask me... what's wrong? lol. OMG. I think I must have a pretty good mean face, because he runs when he see's it. lol. Oh, I hope you get to feeling better soon. I really do honey. I wouldn't wish this on anyone. You know that I allready keep you in my prayers, but will say an extra one for you tonight. You still have that sense of humour about you that I love, but I know your going through you know what right now. Please take care, and know I'm thinking about you, and I'm always here if you need me. Love, your Ruthie girl.
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.
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