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di43
Regular Member


Date Joined Jan 2012
Total Posts : 108
   Posted 2/21/2012 9:43 PM (GMT -6)   
I`m in a lot of pain right now, I`m having intense spasms. I`ve been trying to get up for the last hour to see if moving around will help but it`s crippling and I`ve only just managed. I`m so drained. Anyway thanks heaps for listening, it helps. I hope you are all doing ok as possible. Di xx

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 2/22/2012 12:23 AM (GMT -6)   
Di- I'm so sorry to hear that your pain is so bad right now and crippling. :( I am in the same boat as you- the past few days have been hell for me. I'm getting really depressed about it and it's making it to where I can't do anything but be in bed. I washed a few dishes this morning and I wanted to cry- just from washing dishes. I've been trying to write my paper, but I just can't sit up long enough, I only have one paragraph done and it was supposed to be in yesterday. I hate getting those spasms- I know exactly how you feel as I've had them before- they are terrible and it's so hard to get any relief down there. Can't get the heating pad in the right area and everything hurts. I've hurt so bad at times that I've had to take my underwear off. Sorry if that's TMI. Just want you to know I'm thinking of you and hope you get some relief soon and can get some sleep. *hugs*
shakehead
Current: DDD L4-S1, Arthritis L4-S1, Facet Syndrome, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. In past 6 months have had epidurals, facet blocks and radiofrequency ablation.
Past: Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome. 3 laparoscopies, 2 cystoscopies, total hysterectomy, appendix & gallbladder removal.

di43
Regular Member


Date Joined Jan 2012
Total Posts : 108
   Posted 2/22/2012 6:12 PM (GMT -6)   
Hi Hillary

Thanks so much for your lovely message. I must have finally fallen asleep not long after I posted but I woke up and read it this morning, it was comforting after a bad night :) It really helps just to tell someone and have someone understand. It`s nice to know I`m not alone, but it`s awful you`re going through the same thing. I appreciate anything you can relate to me, it`s not TMI, don`t worry. Today the pain has been better. I had a good nap when I got home and have just woken up, I was so drained from having bad pain nights but feel a bit more rested now.

I also woke up on Monday around 4 AM in crippling pain and it felt like I had broken glass moving around inside me. Luckily I managed to get up quickly so I could at least get up and get the hot water bottle and take medication.
I went to the doctor today and he was very sympathetic. I told him the medication works or takes the edge off about 70% of the time which is more than I thought possible when I was trialling medications and that is good enough at least for now so I don`t want to try changing the dose or adding any other medication to what I already take. If the pain`s still bad next time I go back maybe I`ll see if he can change something but today it was just nice to have someone listen.

I`m so sorry to hear your pain is so bad still and you`re feeling so down. It`s awful when you can`t do anything but stay in bed, I know what that`s like from trialling medications for so long, I used to just go to work when possible and then come home to bed, it`s not quality of life. Even now I`m in bed a lot when the pain is there or just from being exhausted from living with pain. Do you think it`s worth seeing a GP in the meantime before your next pain specialist appointment? You could tell them you can`t do your school work and are staying in bed because of the pain and your next appointment with the pain specialist isn`t for a few weeks. From what I`ve read on here it sounds like GPs just refer you to a pain clinic in the US but perhaps your doctor could give you something (even if they call the specialist for a suggestion) in the meantime - maybe if it`s just for a few weeks they will be more likely to help. I`ve had GPs who have called my pain specialist in between visits and were able to change dosages with the specialist`s recommendation so maybe it`s worth a try. I`m thinking of you and I really hope you get some relief soon. Feel free to email me if you need to. Hang in there honey. Hugs xxx Di

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 2/22/2012 10:00 PM (GMT -6)   
I'm glad my reply gave you some comfort :) I know when I'm having a bad day it's nice to have replies to read on here. I am an open book and will tell you anything you need to know- nothing is TMI for me. LOL I've been through it all!
I'm glad the pain is better today and you were able to get a nap in!
That stinks about waking up at 4am with crippling pain- it's awful when the pain is so bad that it wakes you up. I know what it feels like to feel like you have broken glass in you and it's not fun at all!
I'm glad you were able to see your Dr and he was sympathetic! I think you are right about not changing your dose or your medication if it is working 70% of the time....I wish mine did that.
I am sick of being tied to my bed! I want relief and I want it now! I finally was able to finish my paper today, it took some time with the pain, but I am so glad it's done with and I don't have to worry anymore about it.
I'm actually geeing my GP on Friday for my physical, but he won't give me anything for the pain and I won't ask. Here in the US we have to sign contracts with our pain specialists that we will not get medication anywhere else. If we do, we can be terminated from the practice and I am not going to risk that. Hopefully the test on Tuesday will show something so we know what I am dealing with. I just hope it doesn't show that I have to have surgery, but honestly, I've been in so much pain recently that I almost don't care if I have to have surgery if it means my pain will improve. I certainly do not want to have back surgery, but I am so desperate for relief.
You can email me anytime you need to as well....actually, you never really replied to the email I sent you. You sent a quick reply, but never did a full reply. Don't worry about it though....if you need anything just email me.
I hope you stay somewhat pain free the rest of the night and tomorrow!
Hugs! Hillary
Current: DDD L4-S1, Arthritis L4-S1, Facet Syndrome, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. In past 6 months have had epidurals, facet blocks and radiofrequency ablation.
Past: Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome. 3 laparoscopies, 2 cystoscopies, total hysterectomy, appendix & gallbladder removal.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 2/23/2012 9:25 AM (GMT -6)   
Good morning ladies. I just wanted to tell you both how sorry I am that you are suffering so much with your sort of pain. I just can't imagine what that feels like but I can see that it would be so difficult to even get out of bed. I wish there were answers for all of us and that no one would have to suffer so badly. What meds do you take for pain?

I hope that you are enjoying your membership here. My dearest friends are from this forum and some i have met irl. Some of us are on a facebook page for chronic pain. It was set up as a secret group for our members of this forum. If you would like to join us, just send Michael, Tina, Laura or myself an email. You need to be on facebook to have your name added on to the group.

Hope you can each have a better day. Keep posting with us and let us know how you are doing.

Suzane

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 2/23/2012 11:39 AM (GMT -6)   
Suzane- Good morning to you as well! Thank you for the well wishes, it means so much to me. The type of pain Di & I suffer from is vulvodynia, but I suffer more with my many back issues. I take Percocet 10 twice a day, which doesn't really do much of anything. I really need my meds increased, but Dr is not wanting to do that. I also take Baclofen 10 4 times a day for the muscle spasms, it helped a lot at first, but I am noticing the muscle spasms more and more now.
I love being a member here! This place is so welcoming and supportive! I would like to be a member of the facebook page, how do I email you?
Current: DDD L4-S1, Arthritis L4-S1, Facet Syndrome, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. In past 6 months have had epidurals, facet blocks and radiofrequency ablation.
Past: Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome. 3 laparoscopies, 2 cystoscopies, total hysterectomy, appendix & gallbladder removal.

di43
Regular Member


Date Joined Jan 2012
Total Posts : 108
   Posted 2/23/2012 12:27 PM (GMT -6)   
Hi Hillary

Thanks for listening honey and being here, that means a lot. Yes having replies on this forum helps a lot when the pain is bad, just being heard and able to express what`s going on honestly helps more than I thought it would. I will definitely email you. Yes lol I never replied properly, sorry. I started to reply but then got sidetracked this week venting here instead lol. It was interesting to hear what you described and compare, I will get back to you :) That is good nothing is TMI then lol, it`s easier not having to dodge subjects! Same with me.

Yeah I don`t think increasing the dose is a good idea seeing what some people here are going through with tolerance to meds. Also I know it is in my favour to be on a lower dose for now and the doctors mention that I haven`t had to change the dose for two years is a good thing. I don`t want to move up to a higher dose and then have doctors questioning me (more than usual lol).

You`re right, you definitely do not want to risk anything that will get in the way of the pain specialist, they are so hard to see in the first place and I know it doesn`t seem like it now but I think the pain specialist will put you on medication that works eventually or do something like surgery etc to help, it`s just such a shame you have to go through agony while waiting for the right combination. With the first pain specialist I saw he told me that they would find a solution and he said he didn`t want to make what I was going through sound trivial but he said medications are like shoes and you have to keep trying them until you find a fit and he said he would try a different combination until we found something that worked. That day was the first time I felt hope and like something might change. Now I think I can put up with days of really bad pain as long as I know it won`t last forever and even when I have days like the last few they are so hard but not as unbearable as before when I didn`t know things would change. I think you are in the right hands now (apart from the nurse practitioner I think it was who made that comment about abusing meds lol). I think the difference is that pain doctors try every avenue but other doctors only choose the ones they feel comfortable with.

I really hope the results will be somewhat clear so your doctor can find a solution that will help, hopefully not too much more trial and error. Yes surgery would be scary and invasive but I understand wanting to do anything just to get rid of the pain.

I hope today is a little bit better for you :) Hugs, Di xxx

di43
Regular Member


Date Joined Jan 2012
Total Posts : 108
   Posted 2/23/2012 4:54 PM (GMT -6)   
Hi Suzane

Thanks so much for your reply, I really appreciate it. Sorry I didn`t reply to you in my last message, I`ve only just seen yours. I must have not refreshed the screen as it wasn`t showing before.

I`m so sorry you are in pain too. What sort of pain do you have? I hope that you have a medication that is working and the pain is not so bad at the moment.

Thanks heaps for your compassion about my condition. I take oxycontin 20 twice a day and oxynorm 5 (immediate release oxycodone) one to four times depending on the level of pain. I have tried just about every other medication available for vulvodynia and nothing else apart from Norspan patches has worked. I can`t complain too much, most of the time my pain is now in a manageable state after lots of trial and error.

That is so cool that some of you have met in real life. It feels like I know people already just from being on the forum for a couple of weeks! It`s a really friendly and supportive forum, I`m so glad I`ve found it. I would like to join up to the facebook page. I will send an email. Thanks so much for letting us know about it.

Well take care. I look forward to getting to know you.
Love Di xx
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