Pain - all varieties and kinds

[Endless]

After reading the posts in here for a few months I am beginning to think that people with E experience more pain than the general population. Some research theorizes that excess pain is transmitted the same way our seizures are - hyperactive gaba receptors. Same for Fibromyalgia, Bipolar...

Current theories of the causes of fibromyalgia focus on the hypersensitization of the central nervous system. That is, it’s thought that generalized pain signals are transmitted more frequently than they should be. This is actually similar to what happens in epilepsy: signals to move are transmitted too frequently to the muscles, resulting in seizures. In psychological disorders like bipolar disorder, signals to feel and think are transmitted too frequently. In migraine, specific nerves are signaling pain too frequently.

http://nfa.convio.net/site/News2?page=NewsArticle&id=5308

Anyway, I'm feeling severe joint and muscle pain right now. All joints except my knees and elbows. I also have sharp pains traveling up inside my bones. Everything gets worse the more I move around. I also have a headache, which is pretty common with this stuff. My doc prescribed gabapentin, but it didn't really help and it just made my brain into a lump of pudding.

I'm trying to sort out what pain is due to:
my

• medication (Lamictal 200mg),
• sleep deprivation (I'm only getting 3-4 hours a night due to Lamictal, even with sleeping pills)
• epilepsy

Lamictal does have joint/muscle pain as a side effect, but I don't see bone pain in the list. http://www.askapatient.com/viewrating.asp?drug=20241&name=LAMICTAL

Anybody else have severe joint pain? What's your doc doing about it?

What about chronic pain in general? What are you experiencing, and how is your doc approaching it?

I'm afraid of pain killers/anti-inflammatories used over long periods of time. The AEDs are hard enough on my liver and kidneys without adding that in, too.

 

[huskymom]

I experience deep muscle pain, especially in my legs. It gets worse the more I do, and very bad after a seizure. I have tried neurontin before, and it worked for awhile, but then my system decided that wasn't going to work anymore. So, I try to pace myself at work (which never happens!).

Sorry to hear that your sleep is being so affected by your meds. I am lucky, I sleep just fine. My cocktail is 2,500mgs of Keppra, 1,000mgs Carbatrol, 200mgs Vimpat, and 20mgs Prozac.

I hope your sleep gets better soon!!

 

[Nakamova]

Probably doesn't apply here, but thought I'd mention it just in case: Lyme disease can cause all sorts of pain. (I knew someone who had untreated Lyme Disease and had terrible muscle and bone aches.) Lyme Disease can also cause seizures, tingling sensations and other neurological symptoms, so if there's any chance at all of having been exposed... get tested.

 

[Meetz1064]

I've got

fibro and arthritis both. The arthritis is rampant in my spine, especially the neck and hip area/lower back.

I don't take pills for them anymore--at least not at the moment, because they were causing interactions with my AEDs, Instead, it's a simple stretching routine every time I get in and out of bed, in and out of a chair, stretching exercises on a regular basis. Yoga is good, and I do some form of it on a regular basis.

My docs have done all the screenings needed, and I have been through every injection under the sun, to no avail. What I had to do was something more major.

I DID have to change careers, which has caused havoc in my personal life. But my body feels better since I have. Now I take pills for the problems WHEN I HAVE TO. I'll call the doc, and tell him what's going on. And he'll have me come in, check me out, and give me a prescription. But I don't generally take the pills that often. Even now, I still don't take the muscle relaxers the way I'm supposed to.

I prefer to use things like Tiger's Balm, Bio Freeze, and just good ole heat to help myself out. Herbal teas are great, too. I'm really a mind over matter person--if I can absolutely do it. If I can't, then I WILL ask for help--Sleeping for me can be a challenge because of a pineal cyst, but there are some good sleep programs to listen to. And taking melatonin helps me. But I do wake up in pain if I sleep too well, so it's a viciious cycle.....

Yes, I'm on Lamictal (one of 4 AEDs) but I don't think that it's causing any of the pain. My pain comes from previous injuries during prior seizures. And those injuries weren't minor.

Sorry for the rambling. Hopefully it didn't confuse you any more.

 

[Ruth]

On Oct. 27, my family went to visit my dying brother in law. We parked at the hospital. I had a seizure and fell on the concrete. When I got up, we went into the hospital to sign in as visitors. I got the badges and put them on.

The next thing I knew, I was bleeding by my eye. A nurse took me to the ER. I had fractured the bone by my eye. I do not know what I was given but it knocked me out. They wanted to keep me overnight but I was in another county.

I made 2 mistakes. I did not have my Medic Alert bracelet on. I did not bring my bottles of medicines with me. In CA, they are not allowed to go into my purse. That is where my Medic Alert card was and my husband was too upset to think of it. They wanted to keep me overnight.

Eight hours later, they released me. I was confused and did not know what was going on. My husband took me too a restaurant to eat. His sister came in and visited with us. Then we went home. I have no memory of anything that happened all of Oct or the next several days.

I was in pain. I take pain pills when I need too. I hate to take them because of possible addiction. I also have lower back pain and osteoporosis that pain pills are prescribed for.

My fracture will heal itself. The more closer it gets to healing, the more pain I am having. It will take until the end of January to completely heal.

I agree with you Meetz, mind over matter. I am avoiding the pain pills as much as I can.

I take herbal teas, they really help. I have trouble sleeping, as well.

 

[Endless]

Yes - I agree about pain pills. I don't want to become another ozzie osborne or rush limbaugh.

I have hydrocodone that I use sparingly (maybe once a month) when things get really bad. My Besides the joint pain from the Lamictal, I have injuries, arthritis, and herniated disks in my neck. Also stenosis in my lower back, joint injuries and arthritis in my upper back. Arthritis in hips, knees, feet. Ugh.

My doctor wants me to try Tramadol. I read that can be addictive, so I'm not thrilled about that option, either.

I also try to keep moving, no matter what. I'm afraid that if I quit being active I'll never be able to do stuff ever again.

 

[Ruth]

You are probably right about being active. I have stopped because my fractured bone is swollen and in pain. I was wondering if it is because I have been doing too much.

What do you think?

 

[daisy.girl]

I too have a lot of pain. I have MS, complex partials, 2 herniated discs in my cervical spine, 3 herniated in my lumbar spine (with possible cord compression), stenosis, arthropathy, scoliosis, migraines, pernicious anemia, IBS, and a sleep disturbance.

I have severe neck pain that travel down my right arm, burning, tingling and aching. Low back pain that causes deep ache and cramps into my legs. My legs hurt like a toothache everynight.

I am just starting on Neurontin for my seizures, but I am really hoping it helps my pain too.

 

[Endless]

Hey, Ruth,

I bet your bone is swollen and painful from too much use, too. Fractures are a different thing altogether. It has to heal properly before you use it much. Did your doctor prescribe physical therapy? Because it really helps.

I know my joints is a result of use (and the lamictal). I'm starting physical therapy next week to try to get to a better place with it all.

 

[Ruth]

Hey, Ruth,

I bet your bone is swollen and painful from too much use, too. Fractures are a different thing altogether. It has to heal properly before you use it much. Did your doctor prescribe physical therapy? Because it really helps.

I know my joints is a result of use (and the lamictal). I'm starting physical therapy next week to try to get to a better place with it all.

I learned that the hard way. When I was discharged from the ER, my husband asked what I could eat. They said anything she wants to eat. I was still confused from the pain pills and did not know what was going on. My husband took me to a restaurant and got me a fish sandwich. I have no memory of even being at the restaurant. My sister in law and my neice showed up at the same restaurant. I do not remember that, either. I am going by what my husband and son told me.

I should have only had soup. My husband drove me home and I slept the whole way home, a 4 hour drive. I do not know what damage was caused by the food and the drive home. My husband fixed me regular food the next 2 days.

After a week, I called my neurologist. He has ordered PT for me and an MRI. He thinks there might be more damage than what showed up in the CTscan. I have the MRI next week. In 2 weeks after that I start PT.

 

[Rae1889]

Hi Ruth,
In Canada, the hospital staff is allowed to go into your purse. They probably did not because you had family with you that would have known the card was in there, and pulled it out, they must have assumed that since your family wasnt offering up information that they didnt have any. They would have kept you overnight if it was serious enough. Canada has a free health care system and they would bill your travel insurance company for the costs.

As for the fractured bone, I wouldnt recommend taking anything for it. When I broke both my wrists they wanted to put me on naproxin. sadly i was allergic to that. So i tried aloe vera gel that i had in the fridge on a cool wash cloth i kept in the fridge. it was cool enough to help, but not cold enough to cause frost bite.

 

[Endless]

An NSAID that is GREAT is Voltaren Gel. Instead of taking it by mouth you rub it on the affected parts of the body. It sinks in, all the way to the bone or joints. It's supposed to stay pretty much in the local area where you put it. And, it WORKS!

My pain doc said it doesn't travel through your body or go through your stomach. I know my stomach is fine with it, and other NSAIDs made my stomach horrible. But the website says it can affect your body, so I don't know: http://www.voltarengel.com/consumer/default.aspx

This med has become one of my new best friends. The stuff is horrendously expensive, though.

 

[Ruth]

Thank you Endless. I am glad that it works for you.

I cannot use it because I have Diabetes Type 2. Diabetes is prone to strokes. My grandfather died of a stroke. He had diabetes. Thank you for the suggestion though.

Arnica was recommended to me by a friend. It does not work for pain. It does get rid of bruises. I have a lot of them. They are going away. It is not expensive.

Rae, does aloe vera gel get rid of the pain? It sounds like a good idea. Thank you.

 

[Chel]

Generalised body pain, abdo pain

I had a lot of generalised, bone-deep pain before my gluten-free diet was under control. I do have arthritis, did have osteoporosis and have an unexplained vertebral fracture, and have always had joint and spine pain. However, since going gluten free on diagnosis of coeliac (celiac) disease, have very little generalised pain. So that's something some of you may wish to consider, especially if you were heading down that path anyway.

I can't take painkillers (they don't work for me), so have to avoid whatever causes the pain. Like, at the moment, I have rib pain from the latest bout of pneumonia and there are only two things which help the pain - lie on my left side or sit in certain positions. Oh, and don't cough, breathe deeply, laugh, sneeze, etc - ha ha!

I haven't found any difference in my pain levels since going on my E drugs, but it's early days yet, and I'm not on the right levels. I'm still getting my temporal headaches when my brain is "challenged" (TLE). Migraine prevention is the only way to manage my migraines, too - no good giving me something to take the pain away, as it just doesn't go away.

So I don't know if I suffer more pain because I suffer E as I'm only a recent sufferer of it. However, there is certainly a connection to coeliac disease and diet, from my point of view. Ah, pain - always an interesting topic of conversation!

Chel

 

[Endless]

Here's a clarification:

I'm on the prescription-only version of the Voltaren Gel. It's Voltaren Gel 1%. There is also an over-the-counter version that I'm not sure is even the same drug.

Here's a link to one pharmacy that carries the prescription Voltaren.

http://www.drugsdepot.com/viewitem....aren_1_Gel_1X100_gm_mfg._by_Endo_Laboratories

My insurance makes me pay $20/tube, and I go through about 3 tubes a month. Wish I could use more, but I think there are limits to how much you can use at once. The linked site charges about $30. My local pharmacy charges about $45.

Ruth, I'm going to try out Arnica!

 

[Ruth]

Thank you Endless for the info.