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trayne91 11-21-2013 10:48 PM

Just want to curl up and cry
Right now, I'm just wanting to curl up into a ball and cry and I seriously think it would help to just get it out. And, I know I am just getting started in this battle which makes me want to cry worse. :cry:

I tried Cymbalta for pain and had a severe reaction to it. Dr. gave me Gabapentin. I took 2 and felt irritable, was crying, and pulled my own hair as I paced the house. I went off it and tried Sam-e. It worked wonders until I got a panic attack after about a week, but I double dosed myself the night before trying to get up 800mg from the 400mg. I guess that was a bad idea. And then read about high blood pressure being a side effect, so I stopped. My blood pressure has been very low 100/60ish since my ablation in 2006 or was it 2005? brain fog. But the last few months at the Dr., it has been 122/84 with a pulse of around 84 which the nurse said is from pain. So, I got scared and stopped it. 3 days later my pain got soooo bad that I couldn't walk and I ended up crying on the couch on my stomach because that's where I fell. My husband got so distraught not knowing what to do and became frustrated which in turn made me feel worse, even though he didn't mean to make me feel worse, he just loves me and doesn't know how to help and it drives him crazy, so I cried all night from pain and sadness and it was the worst night ever! I took the Gabapentin again that night because I had to do something.

This time it seemed to do wonders. I've been feeling much better and the pain is really under control, even at just 100mg at bedtime and it's almost out of my system by the time it goes back in so I figure minimal side effects and all. Wrong. I now feel like I did when I took it the first time. I feel drunk, dizzy, in a fog, hungover, brain fog is worse, irritable, weepy, crying, just not clear at all, severe migraine - I had to call the pharmacist at 3:30am to find out if I could take an ibuprofren as it was excrutiating and persisted for 2 days. I decided not to take one tonight and I am scared to death of tomorrow. I don't want to be in pain. I need to get groceries and I couldn't even make it to town for a few things because I felt too wobbly the last 2 days, even with my husband driving. I didn't know if I could walk through the store. I can't concentrate or work. It's driving me nuts! Now, I had to write the Dr. tonight by email, so I don't forget tomorrow, to try to get something else to try. I hope they don't throw their hands up and will keep working with me to try things. I was really hoping this would be it. But, it also seems that any kind of stress or frustration make the side effects worse and I couldn't snap out of it.

Has anyone else had something work pretty good, but just couldn't take it for some reason or another?

I'm just really scared for tomorrow without any meds. I'm also scared to try something new. I always am. And, I just don't want to have to do any of this. It just sucks. What if something new doesn't help as well? Will I ever find something that works? I know I only tried 2 so far, but this trial and error takes so much time from your life as you adjust and work through meds and no one understands that or your pain or how scared you are because who knows what will happen when I take this next pill. It could be good. It could be bad. I wish I didn't need anything. I hate this.

1sweed 11-22-2013 12:05 AM

Re: Just want to curl up and cry
Sounds like your having a really hard time of dealing with pain issues, as well as, mental health, as in panic attacks and over worrying about medication side affects. I can understand your fear of taking medications, as I suffer from allergic reactions to many of the pain meds. But what I worry about the most is your mental state and all the fears putting your stress level too high.

I have low blood pressure like you, but a reading of 122/84 is nothing to worry about. Most people have higher readings at the doctor's office, and it is from nerves, being scared the doc has found something terribly wrong. But then we go home and relax and the blood pressure drops back to normal.

Most meds need to be taken at the dosage prescribed and at the same time everyday. It is dangerous to rapidly increase doses on your own, or even to rapidly reduce doses of pain medications. You might ask your doctor about low dose meds for keeping you calmer. Other members can tell you what they have used and how they tolerated the medication.

I would suggest you find a counseler in your local mental health clinic. These folks can be wonderful in giving you someone to talk too and help give you coping skills to deal with your panic attacks and also the changes in your life brought on by fibro. Going to get help in this area is a good thing and it would relieve your stress and even make your hubby feel better. Many on this site have used the help of a counseler to deal with life issues and anixety and job loss. It is something to consider that is extremely rewarding and helpful.

Also go and read some of the posts under pain management and alternative methods. You might find some good ideas for ways to relax and put your mind at ease. I hope you feel better soon and that some of the posts here give you some coping ideas on stress relief and helping ease the pain that is upsetting you so much. :)

trayne91 11-22-2013 10:35 AM

Re: Just want to curl up and cry
Thanks for your kind words 1sweed. I'll be fine, but I just get PO'd that this is in the way of me being me and I am just not the same person I used to be already and it's just getting started. On top of finding something that works. There is no magic cure or pill, we have to weed through several different meds before we find something that works because what works for one doesn't work for all and each time we lose 1-2 weeks, maybe even 4-8 weeks of our lives just to find out it's not for us and to do it all over again. In the meantime, no one "gets it" and you're wobbly, can't talk straight, in pain, making mistakes because you're not yourself yet and can't even be close to yourself until to find a med that doesn't make you "wacky" and actually lets you not cry. It's a longer process than it needs to be.

I was hoping to get lucky and have the Gabepentin work so I didn't have to do this but I do. I get worried about my Dr. throwing her hands up because when I first got anxiety she gave me two meds and I couldn't tolerate neither so she sent me to behavioral health which did absolutely nothing for me. The anxiety was caused from the Celiac, I find out later and the only thing that helped was to push through the episodes. So, when I was at the grocery store and I started to faint and go blurry vision, I just had to hold it in and tell myself I was not going to faint or die and walk blindly through the store in a non-seeing panic - and doing that over and over and over and over eventually made it stop because my brain realized I was in no danger there, finally. Not a fan of therapy. It was his job to figure it out, not mine, but I did and never went back. I don't like them knowing my business. I also don't like sitting there doing all the talking about nothing with no results. I also had no idea what was happening to me, didn't know what it was, why it was, or how to stop it and did not like not being in control of it. All I knew was I got in the car and all of sudden couldn't breathe, felt like blacking out, and my vision got blurry - also in the grocery store and Wal-Mart. I hate Wal-Mart for some reason still to this day. I have no idea why. And I had to fix myself. Why am I the one with all the mystery diseases? I know I still have something else wrong with me and I just don't know what it is yet.

It's hard not to get upset about pain that just hurts so bad you're yelling out. It's not something I can really help. When I'm in agony, I'm in agony. I didn't take that damn Gabapentin last night, so I'm just sitting here waiting for it today because I know I am in for it. I also feel much more clear headed so I know it wasn't for me for sure now. Waiting to see if the Dr. works with me this time, which I hope. Honestly, I'd rather not take anything but the pain is unbearable in my case so I don't see that happening and well, that ticks me off, too. It's the vent forum, so figured I could just say that, too. LOL While I'm at it, I hate reading things 5 times over with terrible spelling and grammar errors in them, too. Geez Louise. How do I just not spell overnight? I graduated in the top ten of my class back in the day with an A+ in English. Seriously. Somebody go find some glue because I'm just falling apart, but make sure it's gluten free. LOL Sigh and Ugh.

I'm always the one looking on the bright side of things and looking for the best possible outcome in the future. I know I will not have these issues forever like they are right now. I say it everyday as I reassure my entire household about it. I'm always the one holding everyone else together and no one ever holds me together or tells me it will all be ok. That's my job for everyone else. So, sometimes, I just need to have a fit, for me. Sometimes a person just needs that. Thanks for listening.

kmpisces 11-22-2013 11:54 AM

Re: Just want to curl up and cry
I am sorry to hear that you feel so upset. I know how it feels. We all have those times. I just wanted to stop by to offer my support. I hope things start to look a little better for you soon.

1sweed 11-22-2013 12:49 PM

Re: Just want to curl up and cry
I like your comment about falling apart and needing glutin free glue. lol Made me smile. :) I would like to add one more thing about therapy, your experience of being sent to someone is a lot like my first experiences with therapy. It did not stick or click, because I did not like or trust them. For years I was sent to one after another and the results were the same. I could not share anything because I did not trust.

Then one day when life was just so unbearable I picked my own therapist. I went on-line looking for someone I thought I could trust. And I found her. At first I was nervous at the first few meetings and found it hard to trust and feel free to express my fears. But I kept going because I knew if I did not go there I would not be able to stand my life much longer. I saw this therapist for over two years. I worked with her first on my anxiety and lack of being able to work issues and then we worked on many coping skills in dealing with family and other life issues.

I learned how important a journal can be in writing down all these swarming bad feelings on to paper, and out of my head. I learned there are three sides to a coin. The front and back, and the narrow rim. I lived so much of my life on that narrow rim not allowing my self to see the other big wide sides of life. I learned to trust that my secert fears were safe and that I could lock them away or set them free. I chose in the end to set them free.

I am not sugar coating this therapy idea. It is hard work and it is painful, but it sets you free. And you have to learn to trust in the person you pick or find someone else you can trust. And you need to give back and not just sit and expect the therapist to have all the answers when they don't really know anything about you. They are not mind readers. :) Just think about it and know I only have your best interests at heart.

Hope and pray you feel better soon. And know I consider you a new fibro friend. Have a good day! :)

trayne91 11-22-2013 02:18 PM

Re: Just want to curl up and cry
Thanks, again 1sweed. I did spill my guts the therapist, though. My own complaint in life is my parents (I'm 39, so go figure), but they are... "not so nice people". My own therapist told me my life was like a soap opera. I guess when your therapist tells you that, look out! And, I didn't even get started on the good stuff yet. Oh, boy! I appreciate all your support and advice. If later down the road, I feel I need to talk to a professional about coping with it I will. Right now, though, I'm just trying to learn how to be slow and not do it all and manage my pain, which I think are my 3 biggest hurdles right now. I tend to over do it because I'm not used to having to slow down and I don't ask for help. I manage on my own. I tend to run everywhere and I'm turtle slow right now. I have to ask for help with housework, which I have accepted this week and am asking, but feel bad about it. I'm really strong willed and this is the opposite of me. It's brand new. I hurt before, but it's gotten way worse the last month or so, so being couch stricken and having help is new concept. I'm a bit OCD when it comes to doing things myself and my way - even just the way I sweep the floor. So, it's an adjustment period of learning to slow down, know limits, stop when my body tells me to, ask for help, and find a pain relief on my own or with the Dr. (still waiting for Dr. to call today). I know exactly what I am doing and why I am upset and why I don't like it and why it bothers me. I don't adjust to changing well. Funny, because now that I say that, when I seen the therapist for my anxiety I actually stopped talking to my parents on my own accord for my well being and my therapist called it an "adjustment disorder". See, I'm a great analyzer and I even analyze myself with great success. :lol:

trayne91 11-22-2013 02:19 PM

Re: Just want to curl up and cry
[quote=kmpisces;268437]I am sorry to hear that you feel so upset. I know how it feels. We all have those times. I just wanted to stop by to offer my support. I hope things start to look a little better for you soon.[/quote]

Thank you for your support. I am sure they will as soon as I can find a med that or routine that is going to work for me. Guess I'm being a bit impatient about it and kind of whiny, huh?

1sweed 11-23-2013 01:17 PM

Re: Just want to curl up and cry
No your not whiny, you have every right to be a bit impatient. This illness has a way of putting our nerves on edge and the symptoms of fibro just add to our nervous condition. I have always been way too independent to, and like doing things on my own. But this illness has a way of getting in the way of our way of doing things. Just give yourself a break on having to hold it all together alone, all the time. Let friends help you when they can and when they offer support. Later if your condition gets worse you will be thankful there is someone willing to help you. We have a way of pushing our friends away and gritting our teeth, and pushing ourselves through each day alone. Then we wake up one morning and realize we are totally on our own and that is a sad day indeed. So keep friends around even if they drive you crazy sometimes. :)

One last thing I forgot to mention, if you look for a therapist find one trained in EMDR. This is a form of therapy that really helps folks deal with problems brought on from past events that were and are tramatic in our lives. I had such therapy and it works. You can do a web search on it to find out more about it. :)

Tuppence 11-23-2013 04:36 PM

Re: Just want to curl up and cry
How horrible for you Trayne, your mental and physical pain both sound so difficult to deal with. It sounds like you are coping really well but 'coping' doesn't mean it's easy.

I can sympathise with you not wanting a therapist, I have seen loads and it wasn't worth the effort. I am seeing a CBT therapist now but only because my doctor was desperate to refer me again, I only agreed so she wouldn't look so worried. I've had 1 session and it doesn't seem so bad so far but it took me 3 days to recover physically from the 1st session. It's so difficult because we're all different and so are therapists and if you don't click it just becomes yet another frustration- and you have far too many of those to deal with already. I'm sure when you get a good match of client and therapist then it's great but it is something new where you have to work up the energy and start from the beginning again.

Taking new medications can also be awful. Time always moves more slowly when you're suffering and then you have to go through 3 weeks or whatever before you even know if something's helping, not forgetting the side effects. So again your reluctance makes complete sense. It probably would be a good idea to try new tablets but at the moment maybe the stress and unhappiness it causes is outweighing the possible benefits.

One thing you could try is some sort of self help book, these can be completely awful but they can give you a sort of sense of what might work for you, without the awkwardness of having to sit in front of a new therapist. But most of all I want to send big hugs because everything is so horrible and upsetting for you :(

nascarmike 11-24-2013 11:54 AM

Re: Just want to curl up and cry
Trayne you sound like you have some strategies in place for coping and no you do not sound whiney we need to vent and people that don't have fibro can't relate, but we can so let it out it's all good. The med part does suck, hot bath with Epson salt or some lavender body wash may be helpful. Be patient with yourself, and remember to"whine" when you need to.

trayne91 11-25-2013 07:28 PM

Re: Just want to curl up and cry
Aww, thanks for letting me whine. You all made me smile. So, I haven't taken anything since Thursday night. Firstly, I am surprised how good I feel. I have been in so much pain, I lay around crying, but for some reason, I've been blessed enough to get through these last few days without anything.

My Dr. never called back and when I called back they had left for the day. The on-call Dr. called me and said he was sending in Savella to the pharmacy (Friday night) because I complained I probably wouldn't be able to walk all weekend. Lucky me, I did. However, I didn't go pick up the Savella. I know what you are thinking... I didn't because it's another SNRI. Right now, I know how I did on Cymbalta - allergic reaction - and I have tried to take several others in the past for migraines (Celexa, Buspar, Amiprimine, Amitriptyline) and I couldn't do any of them. So, I went without anything but vitamins all weekend. Like I said, amazingly, I did ok... knock on wood. I just called my Dr. and told them I was afraid to pick this up and take it because I know I don't do well on these types of medications.

Since Thursday, I have had a constant headache with anxiety (that frustrating, headache, stuffy nose feeling type) every day. Yuck. I am waiting for all these meds to exit my system before I start something new because I feel like my body needs a reset right now.

Anyway, Dr. called back tonight and said she was sending Cyclobenzaprine in for me to take at night. If I do well on that, after my body adjusts, we can look at finding something to help the nerve electric shock pain, but right now this should help the muscle cramping. She also apologized for not having a quick fix for me. I told her thanks for helping me find something new and working with me. I told her I was nervous about the Savella since I've tried others in the past that didn't work - mostly for migraines and I ended up on Periactin for my migraines (4mg children's antihistamine) and it worked for me. Since gluten free, I don't take that anymore as the migraines disappeared. She said she thought maybe later we could try me on a low dose of Savella like 25 mg, but for now take the Cyclobenzaprine and let's do that first and then work on the nerve pain later.

What disturbs me the most about Savella is 1. the SNRI - I just can't take antidepressants. They buzz my head and I get dizzy and feel awful. 2. The rapid heart beat side affect. I spent my life worrying about the WPW Syndrome I had up until my ablation. So, that's just stuck in me, that any rapid heart rate possibility is bad. I still won't even drink some soda for that reason. Just an old habit and one that's good for me, too.

Although, I have a headache every day since stopping Gabapentin, I am glad I did. I was still only on the lowest dose and I look back and last week and wow, boy did I mess up big time. My work is all screwed up. I thought I only forgot to log my pain one day and I forgot the entire week. Looks like I had some amnesia going on and triple time brain fog. I thought I did things that I just didn't do at all. I can't imagine how I'd be if I kept taking it. It really just made me plain old "stupid" for a lack of words.

So, once I clear out my body and am free of this headache, I'm going to start the Cyclobenzaprine and we'll see what happens and go from there. I did let the Dr. know they had clinic trials out for time release of this for fibro (I read about it), so if it works, that would available in the future. Wish me luck.

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