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Posted 4/28/2010 1:13 AM (GMT 0)
Hi everyone! I haven't been posting as much because my pain has been out of control. I haven't been doing anything differently though.

I see my doctor soon, so hopefully I will get some answers! I can't deal with it like this anymore because after I flare-up, I am completely exhausted. I am so tired. I am so tired of feeling like this every single day. I've been in pain for years...ten years is coming up. Ugh. Every single day. Well, please say a prayer for me because I really need it. I do have nerve damage/disk issues, etc.

I do not take any meds for depression and I do not believe that I am depressed right now, but I know how easy it is to become depressed with CP. So, I am keeping an eye out for that, as are my doctors, my family, etc.

Thanks for listening.

Flower
Posted 4/28/2010 2:18 AM (GMT 0)
Hi Flower...

I'm sorry to hear you've had so much pain... I there with you - so I absolutely understand. I used to get the exact same way - after a flare - it would completely wipe me for days... I bet you are both physically and mentally exhausted.

I'm on an anti-depressant, too, and I think it helps me... I still have my moments... but I'm able to cope w/ my situation much better than without. But my main reason for going on it was the depression associated w/ having a long-term illness and CP... So, it's good you are keeping a watch over it...

Anyway, I sure hope you feel better... I don't know what meds you are on... if any... but it sounds like they aren't working that great?? Have you tried other things? I had to go through EVERY single med on the market before I found the right combo of things... it took about 5 years to get to that combo.

--Tina
Posted 4/28/2010 5:13 AM (GMT 0)
Hi Flower

 

I'm so sorry that your pain is so bad.  I'm there with you also.  I hope you can get relief really soon.

 

hugs

Loretta

Posted 4/28/2010 6:47 AM (GMT 0)
Hi, Flower,
I can hear the exhaustion in your words. I do hope that maybe you can discuss possibly a change in your PM meds with your doctor. It's very common for us to need periodic adjustments.

As far as the depression, it's not only common with CP because of all the losses we have in our life, but it's also got to do with the physiology of CP, which effects the body the same way depression does. So just having CP alone in most instances will eventually cause depression. That's why some anti-depressants also help some with pain. I take one and I know many others here do, so don't feel as if you've got to wait until you're feeling so low that you don't feel like doing anything, or other symptoms you think may indicate depression. Just having the CP for 10 years is enough, and it might be worth a try. Of course that's between you and your doctors.

Hope you find some help to ease the pain.

((((((((((Flower))))))))))

PaLady
Posted 4/28/2010 10:16 AM (GMT 0)
Mom, 9Years, Pa,

Thank you so much! I would think that it would get easier after time, but for me at least it has not. It's even hard for me to think sometimes. I know also when I respond to posts that my grammar is a mess, but I think I'm going to stop worrying about that:)

Momto6-Wow! It took 5 years? How effective are the meds. you are on now? Do they take away a significant amount of pain? Mine only take away about twenty to twenty five percent I think. Is that a good amount? Lately it does feel like less though.

Thank you 9years:)

PA-I didn't realize that it also has to do with the physiology of CP. I had no idea. I am so scared to take new medications. I just want to wait a bit and talk to my doctor about the higher pain levels. I am going to ask for an increase/change in medication and see what the doc says about that. Maybe that will help.

It's funny because even though there are SO many things that I can't do, I still feel blessed because there are so many things that I can do. Lately though, I've been feeling more frustrated about being completely knocked out from this pain.

I usually just need breaks throughout the day during work. I come home and rest all night. On the weekends, I recover from the week. Recently, I come home from work and can't move because of the pain. I get AWFUL flares on the weekends too. I had to take off of work because of the pain. So even though I know that it's still not completely disabling, I can tell that it's worse.

I get so nervous to talk to the doctor about increases.

Thanks for reading my post! I appreciate all of the support here. I can't even explain how much it means to me.

Thanks,

Flower
Posted 4/28/2010 10:17 AM (GMT 0)
Hi Flower,

I'm with you too! I'll keep you in my prayers!

For whatever reason, the flares seem worse lately and today I even got the heating pad back out and gave up before 5:00 AM this morning. I'm in the recliner until this one passes.

I do understand about the depression issue too. I scored SO HIGH on the depression tests, but I can't take anything with seritonin in it because I have seritonin syndrome and that is BAD! Anyway, I don't feel depressed either, but I do feel down sometimes because I hurt....just like you hurt and sometimes feel overwhelmed by it. Like Palady, I can hear it in your post.

Please reach out to us when you are overwhelmed and we will be there. I'm sure it seems like you are alone in your pain when the exhaustion kicks in, but you are not. We understand and we support you.

Also, like Palady said, the anti-depressant may help relieve some of your pain. I have another CP friend (locally, believe it or not) who takes two different ones. She is by no means depressed, but the meds help with the CP and she is able to do so much more than you could ever imagine. I almost wish I could take them. It's certainly something to discuss at your next appointment.

Best to you always!
Posted 4/28/2010 10:27 AM (GMT 0)
Thank you Retiredmom! What is Seritonin Syndrome? I have never heard of it. Thank you for being here for me. It helps so much to know that there are other people that understand, because I think that it's hard for people who don't have CP to understand what we go through.

I'm so sorry that you're also having more flares. Is the recliner better for you than laying in bed? I lay in bed a lot on a husband (it's like a pillow--I didn't know what it was called until I asked my husband, lol, which is why I'm defining it).

Hugs,

Flower
Posted 4/28/2010 10:46 AM (GMT 0)
Hei again Flower,

I do think that others have a hard time understanding, but it's like that with most things I guess. That's why I so appreciate the people here on HW. They understand what others do not and they don't mind that you vent or ask questions or just ask for support.

The recliner does help more than the bed for me. I have no idea why, but just that it does.......

The seritonin syndrome (I'm not sure if I spelled that right) is when the body reacts very strongly to the seritonin and you have an intense reaction that can be deadly. I actually go into seizures with mine. That's how we figured out exactly what it was. It's so bad that I actually had to be taken by ambulance from work (before I retired) the last time I tried a SSRI. It was less than a half of the smallest dose becuase my Dr. knew that I had experienced problems before. I would also suggest looking it up on Mayo or another good medical site if you would like. I don't want to give out false information and it's been a while since I have crossed that bridge.

After the ambulance experience, I was in with my Psych and he and I were discussing what happened. That was when I found out why I had such intense reactions to the migraine meds they had given me in the past at the hospital for migraines. I would try a new anti-depressant, get a migraine, go to the hospital and get a shot that would make me so ill that I thought I would die right there. Turns out that the shots were Serotinin in an extreme dose!!! Talk about your heart pounding and head feeling like it would explode. I don't know why they didn't catch the problem when my BP would go insane!

None the less. It is really rare and most people never have any problems. If you haven't had a reaction by now and have tried to take SSRI's then you are probably fine with that. My local friend did have to try several before she found the right combination so I hope you will have better luck!
Posted 4/28/2010 4:15 PM (GMT 0)
Hi Flower...

It took me 5 years to where I got a more significant amount of pain relief... but I also have a huge tolerance to most medications... so it's been a tough situation. Those first 5 years... I probably had a 25% pain reduction w/ the meds... but it was not enough for me... I was miserable and it was really impacting my life... Luckily, I finally got w/ a wonderful doctor who worked w/ me to find the right combo of meds... I was on morphine, oxycontin, both at one point, duragesic patch, methadone...and then every breakthrough med out there...combined w/ nerve medication and so forth. I had reached the point of desperation. I had the intrathecal pain pump trial... it was successful in reducing my pain...but I ended up w/ meningitis and 30 day hospital stay as a result...(that was '08)... since then, I've just been too scared to try again... Maybe one day...

That being said, I finally found a combo of meds (MS Contin/Dilaudid/oral fentanyl) that worked at reducing my pain more than 50% on most days...which was a success in my book :) ... I've been on that for awhile... maybe almost 2 years...? I don't know... Then, this "surprise" (for MANY reasons) pregnancy happened... and I've had to taper from the equivalent of over 650mg of morphine a day... to where I'm just about off these things... (can I make that final leap?? I don't know yet). My pain is out of control... but it's just what I have to do for 20 more weeks...

So, that's my saga :) I feel for you, I really do. I don't know, Flower.. 20 to 25% reduction in pain doesn't seem like "enough"...you know what I mean?? It wasn't enough for me... and I think your body is telling you it's not enough either. I don't know if that means "more" pain meds... a "different" pain med.. or something other than medication... I just want you to feel better :)

Oh... and I understand the "nervousness" with your doctor... I really do... I'm actually a pretty shy, normally pretty "non-confrontational" person.. :) But, please just remember that it's not your doctor dealing w/ these pain issues...it's YOU. I guarantee if it was your doctor - he/she would be doing whatever necessary to reduce their pain. I just try to be my own best advocate...and sometimes that saying "Ummm, I'm sorry... I can't live like this... and we have to figure out something that works for me"... Especially when it's impacting your life as it is. Just food for thought :)

Take care... I'm thinking of you :)
--Tina
Posted 4/28/2010 6:46 PM (GMT 0)
Flower,
I actually found back when I was struggling to work even part time that the longer it went on, the worse the pain was getting because first, it wasn't under good control medication wise (thanks to overly cautious doctors - nuff said there!) and just the sheer exhaustion of pushing through day after day after day was wearing me down more than I even realized. I think sometimes we don't "see" it ourselves until someone else says something, or until our bodies start to give out. Sounds like the latter may be happening to you. And 20-25% doesn't seem like very much pain relief to me either, but I know it's a balance with working and such. Just remember pain sucks the life and energy and focus from working, too, so there's the challenge of finding a good PM doc.

Sounds like you need some help, and definitely some relief!

PaLady
p.s. From one (former) teacher to another: don't worry about your grammar and spelling and such here. I know it's hard for us to do! LOL But no one's grading you here! :-)
Posted 4/28/2010 9:22 PM (GMT 0)
Flower
I think one way to get around the "nervousness" of talking to your Doctor about an increase in your pain meds. Is telling your Doctor about all the pain you are experiencing and how that your pain meds that you are on are just not quite doing the job as well as they used to do. ( or something like that) Just be honest with your Doctor and explain what is going on with you. Then ask him/her what they think would help to fix the situation that your in? Ask your Doctor if he/she thinks an increase would help? or maybe change of medication? or maybe something else? Then let you Doctor do what your paying him for. Hopefully you will get the Pain relief you need!

I do wish you well!

White Beard
Posted 4/29/2010 3:18 AM (GMT 0)
 

 

   Dear Flower,

 

      I am sorry I havnt been around much. It has been busy here to say the least. *warm hugg*

 

     I too, take an antidepressant. I take it so the "pain signals" arnt so strong, don't "miss fire", and my body can "re set" some what. As you know I have progressive spinal deformity, so the goal in my case is to make me "comfortable physically". The anti depressant is part of that for me.

 

     Serotonin syndrome, is a reaction when specific medicines are taken that can cause the "reaction" in certian people. All that is needed is that "chemical compound / type" to be discontinued and alternate used. Sometimes a serotonin blocker is used but the problems will go away within a day or two. For example I take two medicines that can "possibly cause" seratonin syndrome. But, in my case, all it means is that I have to have more "frequent monitoring". IE: Have specific doctor just for my meds and check up now. Here is more info

 

~~> http://www.mayoclinic.com/health/serotonin-syndrome/ds00860

 

      I am really sorry I havnt been around much. I really hope you can find a few moments of rest. You sound down right exhausted. You are in our hearts and of course in our prayers. Stay strong!

 

*hugg*

  dani

Posted 4/29/2010 9:53 AM (GMT 0)
I had a really tough pain day yesterday, but all day I was thinking that I would respond this morning to everyone. I just wrote for twenty five minutes. I responded to everyone. Then, my computer shut down and erased EVERYTHING!

Thank you all for your responses. I can't even tell you how much it means to me. I'm have to go get ready for work, but I will write what I wrote before when I get home this evening.
Posted 4/29/2010 12:47 PM (GMT 0)
Flower, can you get in to your doctor to talk about why your pain is out of control..
Sure hope you can get a better control on it and will
also keep you in my thoughts and Prayers,
sure wish I was smarter and could give you better advise...
((((((((((((((((((((((((((((((((((((Flower)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz...
Posted 4/30/2010 1:21 AM (GMT 0)
Hi Everyone! This is part one of my posting because I am having such an awful night...so much pain. So I will reply to everyone tomorrow.

Retiredmom-Wow! That's awful. I haven't ever taken an SSRI, but I have taken Ultram. After I took it, I thought that I was having seizures, because I would fall asleep and shake. I haven't taken it since. What you went thorough is so scary. So it seems like you have to be really careful with what medications you take.

Momto6boys-I had no idea that you're pregnant! How has the pregnancy been? I tend to miss things sometimes, so I'm not sure if you've posted about it. Has it been really hard to control your pain? That's wonderful that you've tapered so much. You are so strong. I want to have children, but I'm still not sure how I'd deal with the pain during pregnancy.

THANK YOU SO MUCH!!!

Love,

Flower
Posted 4/30/2010 2:42 AM (GMT 0)
Flower,

I can relate to a pain flare. I just am going through one now. I went down south to my youngest daughter's wedding and RAN around for the weekend and boy did my body object when I came back. For me, when I am in a flare, the pain meds and the nerve meds and everything else hardly touch it, but I hang in there until the flare runs its course. I have bad bad fibromyalgia and back pain as well. The fibro hurts my entire body though. I do take antidepressants and have done so for over twenty years. I am on a combo of three of them. Don't deprive yourself of the medications out there. They can help with the depression associated from the pain. For me, I suffer from clinical depression and would need the meds whether I had physical pain or not. But for those who have pain, antidepressants work well. So keep it in mind.

I'm glad you come here for support. This is a great place isnt it? Keep posting and I will keep looking for ya. God bless, Flower.

Lindaloo
Posted 4/30/2010 5:21 AM (GMT 0)
Flower...

I'm been thinking of you... I'm sorry you are having so much pain tonight.... I hope you are able to get a little sleep, at least. When do you see your doctor?

Re: my pregnancy... these are definite "surprise" babies :) I have six boys ages 15 down to 6. Without all the boring details - I wasn't supposed to be able to have more kids for a multitude of reasons...and that was ok, because of my health issues....plus, we had six healthy kids. Anyway...I'm now 15 weeks pregnant...with twins. :) I can laugh about it now...but, when I found out, I about died...I had gone alone to the doc (my husband was out of town) and the doctor even asked me if I was able to drive home. I didn't know how I was going to make it through, with all my health/pain issues.

Managing a pregnancy with these issues is definitely hard... one of the hardest things I've done... but it CAN be done. The absolute key is finding the right doctor. I'm now being seen at the University of California, San Francisco...and receiving amazing care.... I've got a team of doctors that are managing all parts of me :) The best news is that the babies are doing really well...

Anyway...I know you are dealing with so many other things right now... but please feel free to e-mail me at any point in the future...about having kids and dealing w/ chronic pain. It's through the support of others here that has even gotten me where I'm at now... really.

Thanks for the kinds words, Flower... I appreciate it :) Please know I'm praying for YOU... I'm really hoping you can get your pain under better control... I can tell it's really impacting your life - and I feel for you.

Talk to you more, soon... --Tina
Posted 4/30/2010 5:23 AM (GMT 0)
Linda --

I'm sorry you are in a flare right now... praying it passes quickly for you...

This IS a great place... I completely agree :)

Take good care...and feel better. --Tina
Posted 4/30/2010 7:06 PM (GMT 0)
Momto6boys, PALady, Lindaloo, RetiredMom, 9YearsCP, Chartreux, Dani, Whitebeard,

Thank you all so much. My doctor changed my medications and they are already helping! Wow. What a relief.

As for SSRIs, do you think that my strange reaction to Ultram is an indication that I would have nasty side effects from SSRIs? I don't know. I do want to have a baby one day. Would it be foolish to try one if I eventually want to get pregnant? I know some people who had a very tough time getting off of them.

The side effects of SSRIs really scare me. I know though that they have pain relieving properties. I have read that and discussed that with my doctor and the decision is basically up to me. Ugh. Well, I'm going to think about it I guess.

Thank you x a billion. Reading all of your posts really helped me so much. Hopefully, my pain will stay down because right now it's lower than it's ever been. I mean, it's still terrible, but wow.

Hugs!!!!!!!!!!!!!!!!!

Flower
Posted 4/30/2010 9:46 PM (GMT 0)
Hi Flower

 

Your welcome.  I'm so glad that your dr. changed your meds and that they're helping your pain.  That's great. 

 

hugs

Loretta

Posted 5/1/2010 8:48 AM (GMT 0)
Hi everyone. I just wanted to say thank you for all of your support. This board has been a life saver for me. Pain is down to my regular levels, but not at the point that it was where I am just laying in bed moaning. I am thankful for that. I am cautiously optimistic that it will be easier for me to function now. I'm praying and hoping that this med. change at least helps me to be able to function better. We'll see, I guess.

Hugs,

Flower
Posted 5/1/2010 5:09 PM (GMT 0)
Hi Flower...

I'm SO glad to hear that. I've been thinking of you...and hoping you'd get some relief...so I'm really glad to hear that. Keep us updated on things...

Take good care...Tina
Posted 5/1/2010 9:01 PM (GMT 0)
Prays for you this pain we have is so hard to live with just to get a break would be nice its pretty bad when my mom is 83 and gets around better then me at 53 take care Deb
Posted 5/1/2010 11:32 PM (GMT 0)
Glad to hear you are doing somewhat better, Flower.  Blessings.

Lindaloo

Posted 5/2/2010 9:24 AM (GMT 0)
Thank you! I don't know if I can handle the new medication though because the side effects are bothering me. I'm itching like crazy, and I got a big welt on my chest...but we'll see.

I don't know. Pain shot up again yesterday when I went to the store. Oh well. It's hard that even after all these years I still am accepting being in constant pain. I really thought that this would help, at least for a little while.

I have really bad allergies though so there's always a chance I'll react to a new med., even if it's not the medication itself but the fillers.



:(

Hugs,

Flower
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