HealingWell
Search Close Search
☰

New here

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/4/2015 6:20 PM (GMT 0)
Where do I go from here? Is this the new me? I am new on here. My story sounds a lot like everyone else with fibro. “You don’t have until you have it” I am 41 yr and Looking back now it was the past 15 years that I have had flare ups back issues feeling like I was getting the worst flu ever to then feel fine the next day. (among all my other pains) My symptoms were spaced out until last year, when they all began to almost rotate back to back. I always had something hurting then I began having symptoms overlapping and I could not function as I did before. I seen my physician and was seen by specialists and had the full lab work up. Everything pointed to fibro with IBS, with moderate to severe hearing impairment (due to constant ringing in both ears) , with severe TMD, with Chronic low back pain, with Chronic migraine- with aura, with chronic tension headaches……
I am now being advised to try Botox injections to reduce head/facial tension. Has anyone else here tried this and what are your thoughts? I am nervous about it…
My husband is supportive we have recently sold our company and I am focusing on my health, marriage and home. There are also many times that my symptoms frustrate him and he doesn’t understand. I may look fine and symptoms come and go. He just feels that this is something that will go away with a pill, and I will should be over it.. I get that it can be difficult for others to understand that, but it is also difficult for me to be hurting and not full understand it.. Lets just say that our timing is off. Not hurting is not something that we can plan a time for- I struggle with overcoming this
I am on Cymbalta 60mg am/pm, Gabapentin 600mg am/pm, Clonazepam for sleep, Vit D3, L-arginine plus supplement daily, Estadiol, Norco 2-4 times daily for pain. (which I do take daily!)
I have tried Lyrica- was sensitive to this medication- dizziness; Flexeril – did not relieve symptoms –dizziness.
I do make myself stretch and exercise daily, even if just for a little while. I use essential oils, warm packs, ice packs, Jacuzzi tub soaks, bed massage, rest, and scripture reading.
I am at the point that I am unable to work a scheduled job. I never know what I will feel from day to day. I don’t know if I will have a fibro fog day or feel like the flu hit me, or if I struggle to even stay awake, if I will have such head and facial pain that I am medicating more. And in winter I have a very hard time with driving- I have panic/ anxiety attacks on snow covered roads. I am open to finding a new career path, I just don’t know what I can do… Anyone have suggestions for working at home??
I really just don’t know what to expect as an acceptable outcome of medications or treatments.. Will I ever be pain free again…. What should I focus on as an acceptable baseline goal?
Thanks for listening to my story.. any help or suggestions is appreciated.
Posted 3/4/2015 7:57 PM (GMT 0)
Hi, Tris, and welcome! Pain-free? I doubt it. I've had fibro for 28 years and I've never been pain-free BUT I do have the pain under control and live a fairly normal and enjoyable life in spite of this illness. Finding what helps you is the key.

I didn't want to take all the medications offered me so I tried a more "natural" approach to see if it would help, and it did. I use ibuprofen with food, Tylenol. Magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that has made a significant difference in my pain...and also my sleep! Pain was waking me up at least five times a night and I would have to get up, walk around, stretch, etc. to hopefully get comfortable enough to fall back to sleep. Now I'm not awakened by pain so I only get up once a night to use the bathroom. The extra sleep really has helped. I only take half of what was prescribed so I don't have side effects from it.

I also do stretching exercises, walk daily as my gentle form of exercise and swim in the warmer months. I pace myself when doing things too. It all gets don but in a different time frame.

I personally wouldn't do Botox...at least not without trying other things first. You might try trigger point therapy to help with the head pain. My muscles across my skull were very tight and I had two knots, the size of marbles, at the base of my skull...one on each side of the spinal column. They were quite tender. I pressed on them as firmly as I could stand it and massaged them and repeated this. Then I would stop for a few hours and go back and do this again. Within a few days, the knots were gone and when I massaged my head I could tell those muscles were not as tight and sore. I also could move my head from side to side much better.

I have used this technique for side pain, back pain, neck and shoulder pain. I developed a frozen shoulder and of course it was suggested that I get a cortisone shot in my shoulder. That doesn't fix anything! So I ordered The Trigger Point Therapy Workbook from Amazon. It shows where the trigger points are that are causing the pain. Much of the pain is referred pain. The trigger points for my side pain were in my back. Anyway, it took about 3 weeks or so to get full movement of my arm in my shoulder again by doing this. It has stayed corrected, too. This happened 2-3 years ago. Amazon will let you read a little of the book to see if you are interested in it too and it's under $20.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. There are links about the supplements I mentioned and how they work in the body.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 3/4/2015 9:09 PM (GMT 0)
Welcome,

There is not a majic pill :) ..

There are things that help us feel better and function better..

Some of which you are doing..still our good days come and go at will...so planning ahead is hard..winter is usually much worse...

Its a great forum, nice folks
Posted 3/4/2015 11:18 PM (GMT 0)
Hi, Tris. Another welcome!

I don't really have a lot of hard advice to give, after the 2 replies you've already gotten, but it struck me that we're on a lot of the same meds: Gabapentin 1200mg a day, Hydrocodone (Norco) 3X a day, Clonazepam at night, plus Nortriptyline and Effexor.

Just yesterday, I saw my doc and he wants me to cut down on, and then cut out, the Hydrocodone and Gabapentin. So I'm really going to try (again.) It's hard, when my pain is worse, not better, but hopefully the Effexor, which is fairly new for me (and a lot like Cymbalta, he said) will start taking up the slack.

And, I was also sensitive to Lyrica - caused too much swelling of my eyelids, and made me feel out-of-body or something.

I hear you on the looking fine but feeling awful!...unfortunately, it's something we all deal with entirely too often! I tend to be stubborn and say how I really feel. For me, it's easier.....for some, it's easier to just say they're fine and let it go at that.

We're all in this together, but we're also all different, and what helps one won't help another. I hope to see more of you around the forum.

Debbie
Posted 3/9/2015 1:32 AM (GMT 0)
Tris: My story is a lot like yours. I read and I cannot believe how many of us are out there when I felt so all alone before I found this forum. But I will tell you that I started a new medication last week which I believe has helped tremendously. It is called Savella. I was extremely fatigued/anxious/depressed and of course uncomfortable with pain. I do still have moments of being uncomfortable or feeling flu like and tired but this past week I am so much better. The anxious depressed scared feeling has gone and I can actually function. I pray this is related to the medication and not just a "good spell". As I am new to Savella, I will keep you posted. I tried Cymbalta and did not like it.

Sherrine: I ordered the Trigger Point Therapy Book, Edition 3 yesterday from Amazon. I am anxious for it come in so I can work on my aches and pains without having to go to physical therapy and exhaust my time, money and energy. I will let you know how it goes. Also, how do I add my email address to my profile in case I want to email you directly with a question?

Hang in there Tris, it does get better even though at times we feel it will never end. I believe God is good and he watches over and carries us through. Please don't give up, there is help you just have to find the right combination of what works for you. I have been to countless doctors, tests, medications, alternative therapies and finally I believe I have stumbled on some relief. Good luck.
Posted 3/9/2015 1:36 AM (GMT 0)
To email me just click on the little envelope under my name at the left of any of my posts. It sets you up to email me.

Sherrine
Posted 3/9/2015 2:06 AM (GMT 0)
Hi Tris,

I've only been here about a month but I've found this is a great place!! If you want to get out your frustrations or you have a question everyone here will try to help. If you find something new please let us know. We all try and help one another.

Welcome to the forum!!!
Posted 3/18/2015 9:08 PM (GMT 0)
Thanks All for your feedback. I think I am just fighting myself on how to really learn to pace and accept this new me.
Going through med changes again
Off the gabapentin and started amatryptyline
Following up with PCP for depression and anxiety issues next week.
Still holding off on Botox injections. Going to read up on acupuncture first. Has anyone tried and had results?
Thanks
✚ New Topic ✚ Reply