Thursday, October 19, 2006

Pain Sucks!

This will be VERY long since I've been unable to post the last few months. I'm sorry I haven't been updating but the pain has cut back on alot of things I can do. You see, on top of the MEN2a, medullary cancer, and adrenal insufficiency (which are irritating and make me tired but really don't actually hurt) I have fibromyalgia, chronic myofascial pain, and peripheral neuropathy (which do hurt). I mention this because I have just spent the last month in what I now know is the Third Realm of Hell!

My rheum started me on Cymbalta at 120mg a day in hopes of helping the fibro pain and CMP. The first day I was nauseated and dizzy constantly. The second day I had the same thing only with vomiting. The third day I had my first fibro flare up and I can honestly say it was the worst pain I have ever been in. I would much rather have given birth naturally again, have my adrenalectomy, AND have the thyroidectomy again all on the same day than felt like I felt! :(

Usually I spend my days feeling like I have the flu (ache wise) and like I'm severely dehydrated in my hands, arms, lower legs, and feet (again pain wise). It hurts and it's very draining but I've come to expect it and can cope at least. The pain from a flare though is just unbelievable and I don't see how people do it. I've always heard of fibro flares but until you truly experience one you have no idea what they honestly are like. To everyone who lives with regular flare ups.... I am so sorry and hope you have some way of finding at least a little relief from it.

Anyway- I saw my rheumatologist again on Oct 4th to see how I was doing on the Cymbalta. I told him about the flare ups and that in between I felt almost normal but kept overdoing it because that's how I am. He said that how I feel on the Cymbalta is pretty much the best they can do for me. I had a moment of wanting to cry out of despair but then I reminded myself that something is better than nothing and I am still better off than alot of people. Before I left he said we could do Flexeril at night so I can relax and maybe get some sleep finally (I can't sleep more than 3 hours straight per night). He proved that he does have a sense of humor when he said "I don't know whether to prescribe you a vacation or high doses of Valium!" to which my reply was "Ohhhh heyyy I could give the Valium to my family and it would be just like a vacation"! :) I'm liking him more with each visit. Of course, we both forgot about the Flexeril when I left his office. lol

A few days later the pain was so intense that I finally gave in. I just can't face the pain every single day anymore. I tried and I think I've done pretty well the past year. I don't want to hurt anymore. So I called his nurse and asked for the Flexeril and called Dr. M and asked for a pain killer. I ended up with Vicodin and my first words were "I don't have a headache and that's all this is good for!". lol

The first night I took both and they both actually worked!! I sat here in front of the computer feeling no pain at all. I looked at my hands, arms, I touched my legs.... all pain free. I honestly cried. It was the first time in over a year that I had no pain at all. That night I slept for 4 1/2 hours straight! Of course, the next night they didn't work so well and I had pain but it was lighter than it usually is and again I slept for over 4 hours. :)

Tomorrow I have an appointment with Dr. M and I'm going to ask for something stronger. I know that most doctors are afraid to prescribe narcotics but I'm not worried about addiction. Over the years I've had just about everything there is out there and I've never been bothered by it. I'm the kind of person who only takes something if I just can't suck it up any longer. I think Dr. M will realize that and help me out. I don't want to be a spaced out zombie just be able to make it through the day and be a part of my kids' childhoods.

Sis is doing well. Nothing wrong with her right now and her jaw problems seems to have corrected itself. I'm still getting her a mouthguard though to help with the teeth grinding at night. I'd hate to see her have dental problems later.

Big B has been having trouble sleeping for the last two months. We had his TSH levels tested and he came back at over 25.0 on it! No, that's not a misprint, it wasn't .25 but 25.0. Can you believe that? Normal range is about 0.4-5.5 mU/L . Dr M prescribed him 200mcg on the Synthroid which is 50 more than I am on so it worried me at first and I called the ped endo to ask her if she thought it was alright. She said definately considering how high his numbers were.

He hasn't been feeling any different besides the insomnia so it was shocking to find out his levels were that out of whack. I guess I need to expect things like that considering the three of us don't have a thyroid and have to depend on a pill to do the work for us.

So that's it. The big long update. Pretty boring I know. Next week I see a psychologist that deals in helping people with chronic pain. The hope is that he can teach me ways to ease the stress and pain so I can deal better with life in general. I'm honestly excited to see how this turns out. So wish me luck and I promise not to go two months again without updating.

-Also, to all the people who do searches and end up at this blog... please leave a comment or email me if you need help with a question. I'm not a doctor or anything but I do know many and can put you in touch with people that can help if I can't. It hurts my heart to see all the MEN2a, pheo, cancer, fibro, etc searches because it means someone else is out there hurting. If I can ease your hurt even a little then I am happy to help. -


Anonymous said...

"I've had just about everything there is out there and I've never been bothered by it"
That's not the point Jo, narcotics are different,they determine physical and psycological addiction + assuefation.
I'm not saying dont get them, just be careful. Oppioids are very effective molecules but also very dangerous, also on the short term. Even if u get them only when u "can't suck it up any longer" they still determine addiction.
Have looked up THC? it's very effective on some kind of pain and u can get it easly in canada if not in the US.
Good luck

Jo said...

I'm sorry. What I said was mostly tongue in cheek. I do take it seriously in my life but was just trying to act lightly about it while posting so as not to always seem so down or plagued by something.

Thank you very much though for your concern and caring. Most people wouldn't even bother to post so I appreciate you taking the time.

I haven't even heard of THC but I will look into it now. Thank you for mentioning it. I'm always open to new or better ways of dealing with this that don't have to do with more medications so the tip is appreciated.

Again, I'm sorry I made this particular post so light and carefree about the subject. I shouldn't have and I should have let people know that I take it all seriously.

Thank you for your comment. :)

Anonymous said...

C'mon Jo! I wasn't telling you off! and you dont have to be sorry about anything! Your post wasn't light, your life isn't, anyone could see that.
As a vet, knowing those medicaments, i was just trying to give you advice coz most people don't really know what narcotics are and their massive side affects.
Regarding THC, it's Tetrahydrocannabinol, the main active molecule in Cannabis. At different concentrations it sorts different effects, among which the analgesic effect (painkiller), without any psychic effect.
There is a lot of negative propaganda about it in the US and in many other countries. Italy has made its use legal for medical purposes only a few weeks ago (just for pain treatement). I know for sure it's legal in Canada. It gives NO addiction and NO assuefation.
Thanks for you comment on my blog, I've replied.

Jo said...

Oh no hun, I didn't think you were telling me off. Like I said, I appreciate you bringing up the point because as you said, alot of people don't know about this stuff.

What I meant in my reply was that I was making light of having to take pain meds which again, I shouldn't have. I think it's like some messed up kind of coping mechanism for me. You know, sound like I'm okay so everyone else will believe the same?

Hopefully my tone is coming across right in my replies and that is honestly thanking you and appreciating your posts. Sometimes I post without thinking and do try to make light of some of the stuff I post so that I don't get the "are you okay?" emails. lol. I also often forget that other people are reading this blog.

I in no way thought you were telling me off or anything else. Most people wouldn't take the time to make a comment like that unless they honestly cared. :)

I now understand why THC isn't commonplace here in the US. It seems they can be lax about the crap that really doesn't matter or do anything but when it comes to something that is actually BETTER for someone they become anal and won't approve it. lol Obviously there isn't enough money to be made from it for the FDA to consider it. *disgusted with policy look*

It's very interesting to read about though and gives me something new to learn about which I'm such a research junkie that loveeeeeee having something new to learn about. ;)

Thanks again.

Anonymous said...

I think your tone comes across right everywhere , may be mine didnt :)
What I meant was that u shouldnt apologize about stuff you write, after all it's your blog and even if other people read it they should always do it with a critical approach.
Of course I understand you try to make it light, that's your stile and of course your way of taking life.
But now, let's stop apologizing to each other ok? :) I think it's common with people who suffered psycologic abuse, u always feel the need to explain things and apologize. It happens to me all the time but we dont need to explain anything to anyone.
Good reading about THC, hope it will be of some help.

Elder Faery said...

To be honest Jo, I reckon that a lot of people read but don't comment because they don't know what to say. The natural instinct I get is to want to somehow take your pain away..and then, well, one realises one cannot and then becomes mute. I almost didn't comment..I just felt speechless about how much pain you are enduring. And I dunno about painkillers...seems to me you need something extreme for a while to give you a relief from the extreme pain. x

Jo said...

Good point Jones and I think you have a point about our need to apologize. ;)

EF- Good to see you around girl and thank you for your insight. It makes sense because I do the same thing with other people's blogs. I never know what to say and just want to stop their pain but know I can't and end up saying nothing.

Thank you for taking the time to comment hun. I appreciate it and just know that you never have to say more than a simple "hello" to let me know you care. :)

Frankie said...

Hey there, I have been wondering how you were because I haven't seen you at any blogs for a very long time.

I'm so sorry you have to go through this. Is the pain easing any? Have "they" found anything to help?

My heart aches for you.

Reading the comments where people don't know what to say, I think there's a lot of truth in that, but I'm just being very frank and honest.

I do care. No one should have to endure this. Hugs.

Bebe said...

I did indeed stumble across your blog! I didn't read many of your posts, but I believe you are an amazing person with an incredible family. I wanted to share my FMS experiences re: my rheumatologist, who has Fibro too. She feels that sleep is of vital importance for healing and pain management, so I take Zanaflex( a muscle relaxer like Flexeril)and Lunesta (sleeping pill) at night. This generally results in 6-8 hours of sleep a night. I also take gabapentin, an anti-seizure med for neuropathy( the sharp, elecric-shock kind of pain) and this has helped me most of all. Opiods(sp?) are too heavy-duty for me, zone me out and are not effective for most pain. I take Ultram on bad days and for headaches.
I do self-medicate with THC, It helps in many ways. It improves my appetite but also relaxes my muscles so swallowing is easier. This is a personal choice, naturally.
I don't write about Fibro much on my own blog- after 2 1/2 years, I'm still not sure how to express how I feel to my friends and loved ones.
Or if I should.
Lovely to meet you! BB