Pain Confusion- Any suggestions?

General
1

Hi, I've been having chronic migraines since before I was 5 and then from 14 on. So, you can see its been over 17 years of straight pain. Every year the pain got more frequent until now adays its pretty much non-stop. I've had a "migraine" every day for YEARS. On top of that is the "Fibromialgia" pain and the pain from various injuries and health problems. What that boils down to is constant pain. The least pain I have in a day is a 4 on a RARE good day, on average its a 5-6 on a 1 to 10 scale, often ranging at 7 or above to 10. Its gotten to the point where I went from hoping to find a way to prevent and solve the problem to just trying to find a way to live with it (especialy when they told me about 2 years ago that its all Chiari and there's nothing they can really do about it).

Over the years I've tried TONS of medications to help prevent or help with the pain and pretty much nothing worked. I live on a heck of alot of advil and Vicoprophen when I seriously can't stand the pain any more (since I only have a very limited supply from my Neurologist who doesn't want to treat my regular pain that means maybe one at night when I just can't take it any more.) I also take muscle relaxants for muscle spasm in my neck and back & an Anti-inflamitory they started giving me recently. None of these things help much. The doctors keep telling me I'm going to kill my liver with the advil but its one of the few over the counter things that helps so I've made the choice to risk my liver to try to keep my sanity.

I've got a weird body that tends to be allergic to things the average populous is okay with and what they are allergic to I'm okay with. That means that Lyrica and Cymbolta make me sick, as do many other migraine drugs. The rest have no affect on me at all. There's plenty of other medical issues I have too, but I'm going to spare you all the details for the moment so you don't get bored and I don't get reduced to tears and feel like a whiney person while relating them.

Here's my main question: What type of doctor am I suposed to see for the pain?

My Neurologist only wants to work on the "headache" part, which he can't solve, and doesn't want to be responsible for treating the pain, but when I try to see a Pain Management doctor they tell me they don't know what Chiari Malformation is and don't know how to treat it. So I went to see a Rheumotologist and he's trying to give me the anti-inflamitory and see if its Fibromialgia or Chiari. The Anti-inflamitory only helps a little bit when my neck locks up solid and I can't move it. It doesn't help the pain over all. I've tried about everything you can try in those many long years, and nothings helped. Each year the pain gets worse and I've about reached my limit on it. I try to be pleasant about it and not complain or whine. I try to stay cheerful and find fun in things, but I've pretty much given up my entire life due to the pain. I can't work, I can't see my friends, I can't stand up for very long any more, I can't even leave the house or have a regular day- all because of the pain and fatigue. I've tried everything non-medication too- massage, PT, Chiropractor back in High School (which I found out recently is a big NO for Chiari), Acupuncture, bio-feed back- you name it, I tried it. Nothing worked.

My neurologist told me to go to a Pain Management doctor and tell him/her to give me a time-released narcotic based pill, but as I said no Pain Management arround here knows what Chiari is. So I'm stuck in limbo, in constant escalating pain, and I just don't know how much longer I can stand it. I'm seeing a Chiari Center hospital in May (if I can get my insurance to agree to it) in Wisconsin, and I'm doing my best to keep biting my lip, trying to keep a cheerful face on, and just dealing with it til then, but I'm running out of options and I could really use some helpful suggestions please. Thank you!

2

I wish I had good advice for you. My amazingly wonderful daughter (13) has had a headache (usually about a 7 out of 10) for 18 months now...24/7. She too had a Chiari 1 (11mm, I think it was). She has had not relief and has tried everything under the sun. The NS here is supposedly THE guy to go to but even so, he doesn't know if surgery will help or not and isn't very positive about it without seeing a build up of fluid in the spine. Good luck. Watching my daughter, I see how awful this whole thing can be. Don't loose faith though, there's a ton of love on this site.

3

It seems i am in about the same boat except for how long. My NL only wants to focus on the migraines and ignore the pain in the rest of the body. I looked at the center in WI but I decided on the Mayo up in MN. I am close to my wits end to. I do not know where to go from here. IB is being popped like candy which is said to say cause i cannot stand pills lol.

4

Well, I can tell you you're already helping your daughter just by being there and supporting her. I come from the type of family that if they can't see the bone sticking up out of your body then you're not sick or injuried. My whole life every time some new medical problem poped up, (the various symptoms that Chiari causes like the migraines, the IBS, the body pain and other things that no one knew were related at the time), the first thing my father would say was that I was making it up just to get out of school or for fun. You don't know how embarassing it is til your father asks the doctor right in front of you "So, how would she go about faking these tests results?" The doctors are shocked and horrified and I'm embarssed and hurt, but aparently their word and the test results you can't fake aren't good enough to prove I have medical issues. My mother and brother are just as bad and my brother even told me in high school growing up "You should just kill yourself and stop causing so many problems already." Even now a days you get tons of people saying that they can't physicaly see anything wrong with the outside of your body, so you must be faking it. Your being there, and accepting her medical problems and loving and supporting her is something that is completely priceless. And while she's in pain, and you may feel helpless, you standing with her is worth more then I can ever express. I hope you keep that in mind on the worst days and it brings you both comfort.

& on a side note, if she's not already doing this, Massage does help some. For me it generaly only lasts so long as they are doing it, and I do normaly have bad muscle spasms and knots in my neck and back on top of the Chiari, but its worth a try for her. Make sure they do light pressure and she tells them if they need to push more or less, but it does truly help some. If just for some concious relaxation time. They can gently help to stretch her neck too, which can help open up the spinal fluid flow and pressure. I don't know how it is where you live, but here in NJ, if you get a note from your doctor saying you need it for medical reasons they also can wave the sales tax, which is about $5. Its not much, but it helps.

Gma7938 said:

I wish I had good advice for you. My amazingly wonderful daughter (13) has had a headache (usually about a 7 out of 10) for 18 months now...24/7. She too had a Chiari 1 (11mm, I think it was). She has had not relief and has tried everything under the sun. The NS here is supposedly THE guy to go to but even so, he doesn't know if surgery will help or not and isn't very positive about it without seeing a build up of fluid in the spine. Good luck. Watching my daughter, I see how awful this whole thing can be. Don't loose faith though, there's a ton of love on this site.

5

Miriam…hang in there, your not alone. I went to a rhumetologist this week because the NS and the NL said that the pain, fatigue, numbness and memory loss is not from the Chiari, because they fixed that with surgery. It must be that the Lupus is now systemic.
The Rh said no it’s not the Lupus, it is from the Chiari, find a new NS ( mind you they are all in the same hospital). After my little break down in his office, because I know ( no pun intended), it’s not “all in my head” he decided to change they way they have me taking the Lupus meds and gave me a regimens of Steroids. I have felt better for the past 3 days than I have in 2-3 years. I told my husband I feel like all of the doctors are the scare crow from the Wizard of Oz…they all say not me and point in 2 different directions at someone else. I am to the point I don’t care what the problem is, I just want it fixed!

As far as migraine pain goes I take a Lorcet and an excedrine migraine along with really strong tea or cola…lay down with an ice pack on my head and I am almost pain free within the hour ( a little loopy, but able to function enough to be awake).

Everyone here is so helpful and supportive…hang in there, your not alone!

6

I also am in pain 24/7 and seen every kind of doctor & healer possible. I do have a Pain Mgmt dr now but I live in a City with a Teaching Hospital. I would try to find an Osteopath in your area. Instead of an MD they are a DO. I saw one for a PCP and a Pain Mgmt dr until I had to have more surgery. They are more educated than a regular MD. They do manual medical manipulations better than a Chiropractor. They are also very caring individuals that spend a lot of time with each patient. Not just your regular 15 min. in & out job. I think you would be very pleased. If you need a name in your area let me know & I will call my DO. They are a very close group. They actually have DO hospitals in the western part of the US.

7

I take feverfew, riboflavin, and magnesium (also sold as Migrelief) daily as a preventative. It has been the only thing that has worked long term. Depakote is also a prophylactic med, but of course that is rx. Migrelief is OTC and if you cannot find the supplement under the brand name, you can find each of these supplements individually.

8


I'm not sure what Lorecet is...? I've been perscribed A TON of medications over the years, so honestly the list is so long I can only ever remember the most recent one I was told to try. I'm sure some of this comes from the memory loss too, but the list is ridiculously long. Unfortunately Excedrine Migraine is one of the things that makes me sicker. I've got stomache problems (another one of the side issues) and it seems to upset that as well as making the pain worse. But oddly caffenine doses in the form of soda (Pepsi or Coke) seems to help, as does Chocolate while I'm eating it and for 15-20 mins after.

I'm sorry the doctors are shipping you arround like that, I'm getting the same with trying to find someone to treat the pain while I wait to see the Chiari specilists in May. And I end up breaking down and crying a bit while trying to talk to them about the pain too, its embarassing, and you feel horrible letting them see it, but honestly I think sometimes they need to see it to be reminded that we're people and not just symptoms and pills or a pay check. I can try to make jokes about being sick all the time, and in constant pain, but when you really try to talk about the details or the specifics, that's when its harder to hide or keep the pain in. We shouldn't be ashamed of it, but we can't let it control us either. Its okay to let it out at times, its the only way to stay sane.
Sslakemom2 said:

Miriam......hang in there, your not alone. I went to a rhumetologist this week because the NS and the NL said that the pain, fatigue, numbness and memory loss is not from the Chiari, because they fixed that with surgery. It must be that the Lupus is now systemic.
The Rh said no it's not the Lupus, it is from the Chiari, find a new NS ( mind you they are all in the same hospital). After my little break down in his office, because I know ( no pun intended), it's not "all in my head" he decided to change they way they have me taking the Lupus meds and gave me a regimens of Steroids. I have felt better for the past 3 days than I have in 2-3 years. I told my husband I feel like all of the doctors are the scare crow from the Wizard of Oz...they all say not me and point in 2 different directions at someone else. I am to the point I don't care what the problem is, I just want it fixed!

As far as migraine pain goes I take a Lorcet and an excedrine migraine along with really strong tea or cola....lay down with an ice pack on my head and I am almost pain free within the hour ( a little loopy, but able to function enough to be awake).

Everyone here is so helpful and supportive...hang in there, your not alone!
9

Andrea, thank you for the suggestions on the herbs, but I have a metabolic absorption problem. I'm already on time released suplements and they don't do much to help my physical symptoms. I've tried Depakote in the past, but that didn't seem to affect me. I do appreciate the suggestions though, I never know when I might hear of something new to try. :)

Andrea Jones said:

I take feverfew, riboflavin, and magnesium (also sold as Migrelief) daily as a preventative. It has been the only thing that has worked long term. Depakote is also a prophylactic med, but of course that is rx. Migrelief is OTC and if you cannot find the supplement under the brand name, you can find each of these supplements individually.

10

Feverfew is the only herb, the rest are vitamins you would normally take with a multi, just in a higher dose, it may be worth asking your provider about. I hope you can find something to help. I was put on a variety of prophylactic meds, most are anti-hypertensives and I am hypotensive...those spelled disaster for me!!

I would also try taking Excedrine Tension Headache, no aspirin, which usually causes significant stomach upset in many people. I have an asa allergy which prompts horrible tinnitis (of course the chiari is causing that now anyway)

Good luck, I hope someone has a suggestion that will help.