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Posted 7/11/2012 11:57 PM (GMT 0)

Hi everyone,

My name is Meg and I live in New Zealand. I see you have another Meg here so I'll call myself MegNZ to avoid confusion. I've had Fibro since my early 20's (I'm 50 now – how did that happen?!) but apart from really bad flares I've been able to mostly pretend it's not happening (long story as to why I did this). That all changed 12 months ago when for some reason the volume nob on my Fibro got turned up to 10 and has stayed there. Even my worst flares weren't as bad as what my Fibro is like a lot of the time now.

I've been to see a Neurologist (who was a really unpleasant chap) to rule out stuff like MS. He did a physical exam and said there's nothing neurologically wrong. Not sure he can say that without doing scans etc but I'll stick with being relieved I don't have MS.

I've seen a Rheumatologist who thankfully knows a bit about Fibro and was really nice. He ordered a bunch of blood tests to rule out other stuff but is pretty sure all my current symptoms are Fibro. I see him again in a few months to get the results.

Last week I saw a Consultant Anaesthetist at my local hospitals Pain Clinic. He too was really nice. Yay! I was told the Pain Clinic specialists usually advocate people coming off analgesics and reduce their pain, or at least manage it better, by physical, occupational, and cognitive therapy. Instead he increased my tramadol to 100mg 8 hourly along with paracetamol (I think it's called tyenol in the U.S.) and ibuprofen, and 300mg gabapentin 8 hourly increasing up to 1,200mg 8 hourly over the next few weeks. So far it's helping a fair bit - tho, as I found out yesterday, I still pay heavily if I try to do too much. And “too much” for someone with bad Fibro isn't much! lol

I've been horrendously depressed the past 9 or so months. The Psychiatrist I'm seeing increased my nortriptyline to an anti-depressant dose but it's done squat. I don't know if it's tramadol's effect on serotonin or the gabapentin or both but I don't feel anywhere near as depressed now. I can sense all the blackness is still in me but I'm not connected with it. Feels weird. Really incongruent. But I guess it's preferable to feeling hopeless and helpless.

I'm looking forward to getting to know you guys and it'll be nice talking with people who get it.

MegNZ

Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:16-18











Posted 7/12/2012 12:11 AM (GMT 0)
Hey Megnz! I got diagnosed with fibro in March, but I can now see that I had early symptoms long ago. So I am on savella 150 mg a day, 100 mg tramadol a day or as needed, and I have muscle relaxers to use when needed. I have 4 kids, just finished full time school which unfortunately can't use at the moment till I get good control of the fibro so I can work :-) That about sums up me, found this forum 2 or so weeks ago :-)

I am in Florida BTW
Posted 7/12/2012 12:20 AM (GMT 0)
Hey MegNZ, welcome. I am a new one on the forum too. Diagnosed about 2 months ago, though experiencing symptoms for a bit as well. On Lyrica 150mg a day and Tramadol as well. Doing some light exercise and resting while I can as flare ups are often and definitely not a pleasant experience.

I too am in Florida. :)
Posted 7/12/2012 12:23 AM (GMT 0)
Hiya Megnz,

First off I'd like to say that if you ever get the mad urge to send someone in the states some Minties, I'm your girl!!!!!!

I'm glad you are feeling less depressed. I had that reaction to Chantix when I quit smoking. Yes, the drug that makes others homicidal and suicidal makes me extremely mentally well. Make sure you tell your doc how you feel so they can keep you on the stuff that works for you!
Posted 7/12/2012 12:48 AM (GMT 0)
Hi MegNZ,

Welcome to the fibromyalgia forum. I am so glad that you found us. I think you will like it here. When you get a chance, check out the thread titled "fibro 101". It is the first thread on the forum. It has so much good information in it.

I too am glad that you are feeling better than you were. I take antidepressants and many other meds, but I think I found a good combination. I still have pain, but it is managable.

I hope that you have a nice evening. Take care, keep posting...

Hugs, Karen
Posted 7/12/2012 7:41 AM (GMT 0)
Welcome MegNZ! I would love to visit your area. I live on an ice burg in Alaska. Lol. I dont think summer is ever going to arrive. Depression is not uncommon with fibro. I have suffered with chronic depresssion over 20 years. I am happy to say it's so much better. I think it's better because I have a better handle on my fibro. I was able to make several changes in life to make my fibro better. I learned so much from this site. It gave me hope and support to fight through this. I hope you can find the same here.

I have 2 great books on depression and fibro that you should read. It made a world of difference for me. The author suffers from depression and fibro. Her name is Mary Copeland. You can find them on line. Have you ever tried a sad light for your depression? I would not give anything for it. It really helps with serotonin levels.

The more you can educate yourself on fibro and depression the better tools you will have to use in this chronic illness. Reading other Post and getting great ideas from others is what got me better. My Dr's never shared 3/4 of this stuff I have learned here. With me learning all this info on fibro the healthier I have become.
I try to keep my life very simple these days. The more stress I get myself into the more pain I get. I have learned to keep my treatment plan very simple. I take vitamin supplements, rest, light excrcise, heat, subutex for pain and anti depressent.

I hope to see you around the forum. Feel free to ask questions or just to share your day with us.
Posted 7/12/2012 12:14 PM (GMT 0)
Hi, Meg, and welcome!  I'm glad to see that your rheumy got more blood work done.  You might have something else along with fibro going on, too.  I discovered that myself this past winter and, because of that, I was put on a muscle relaxer along with ibuprofen and Tylenol and am doing so much better.  Hopefully your doctor will get to the bottom of this increased pain.  Fibro isn't usually a progressive illness so that's why I got rechecked out. 

 

I do use some supplements that help.  The only prescription I take for fibro is Robaxin (the muscle relaxer).  I take ibuprofen, Tylenol, malic acid/magnesium and vitamin D3 supplements, and an alternative pain product called Curamin.  All of this, combined with gentle stretching exercise, gentle daily exercises like walking and swimming, and pacing myself have help me be in control of the pain and fatigue of fibro. 

 

I see that Karen directed you to Fibro 101...the first thread on the forum.  You will find links about some of the supplements I mentioned there and how they work in your body.  All the links are good so do read this.  Knowledge is power and we do have to be our own advocates with this illness...as you have found out!  

 

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 7/13/2012 7:04 AM (GMT 0)

Thanks for the great welcome guys. I've had a crazy 24 hours and am finally plonked on my bum with my feet up. Most of the craziness has been fun tho which makes a nice change.

Hi Dustinshunny, I haven't thought about taking a muscle relaxant. How does it help you? Like which muscles does it work on? I've got one paper left to do to finish my degree but I'm too crook to do it at the moment so I can relate to you having to wait til you're able to work. What did you study?

Hi FibroMomof4, no idea how you guys with 4 kids do it! I take my hat off to you. 2 was more than enough for me. I'd like to try Lyrica but it's not available here yet. Is it helping much?

Hey there Kaely, ppl usually ask me to send them Marmite. Minties are yum huh. How did you get hooked? Have you visited New Zealand?

Hi Getting By, thanks for steering me to the Fibro 101 thread. Love the spoon theory story. Yea, I'm finding getting the combination right is a really important part of the battle – and finding doctors who listen and take me seriously. I thought I was being really smart writing all my symptoms down when I saw the Neurologist but it backfired on me. He thought I was histrionic and neurotic when I gave him the list. Doh.

Hi Ak Angel, an ice burg in Alaska? Too funny. Thanks for the must read book recommendations. I'll google sad light, haven't heard of it. It's quite possible the reason your doc hasn't shared ¾ of the stuff you've learnt here is he/she doesn't know as much as a lot of Fibro survivors. I have a friend with Lupus and she has to be her own physician some of the time for the same reason.

Hi Sherrine, yea I'm wondering if something else is causing some of my symptoms. I asked the practice nurse at my GPs medical centre if anything came back abnormal from the blood tests my Rhuematologist ordered. I can't remember most of what she said except that my ESR was very high which is interesting because Fibro doesn't cause inflammation. The malic acid/magnesium supplement article was interesting. I'll see what's available here.

Time to make some dinner I think. I'm in the process of switching my 2 dogs (11 months and 17 months) over to a raw diet. Bagged 60kg of meaty bones, green tripe, kidney, tongue, heart, beef mince and chicken frames today. Ppl say green tripe smells disgusting but I think it smells awesome. Takes me right back to spending time at my Aunty and Uncles' dairy farm when I was a kid.

MegNZ

Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:16-18

 

Posted 7/13/2012 11:14 AM (GMT 0)
Hey there MegNZ, I have only been on Lyrica for 2 months. I am still trying to figure out my cocktail that will assist. Just had my dosage upped earlier this week. I'll keep you posted. :)
Posted 7/13/2012 12:10 PM (GMT 0)
My ESR and CRP were very high....inflammation!  Fibro isn't an inflammatory illness so there probably is something else going on with you besides fibro.

 

I was given a muscle relaxer and that has helped me immensely.  The one I take is one that's been around for years called Robaxin and I have no side effects from it either. 

 

I hope they investigate further because the inflammation isn't caused by fibro.

 

Sherrine

Posted 7/13/2012 4:52 PM (GMT 0)
Hi, MegNZ. Glad you've joined us!

Interestingly, I'm on 3 of the same drugs you are...Nortriptyline, Gabapentin, and Tramadol (although right now I'm on Norco instead of Tramadol because I'm recovering from spine surgery) - anyway, I thought that was interesting.

I have a daughter who would give her right arm to visit your fair country! She has researched it up and down...really has the travel bug. It sounds gorgeous!

Debbie
Posted 7/14/2012 4:31 AM (GMT 0)
No, I had an online friend who got me hooked on them. She thought it was the funniest thing ever that I fell in love with them. She also sent me chocolate bars you guys have that we here in the US don't have but Minties are the best! I, in turn had her go buy some grape juice (purple) and try it. Her reaction was priceless. She said she'd never tasted anything so good lol.

Oh and ewwwwwwwwww marmite, you can keep that! I haven't paid her back for that yet, but I'm thinking of sending her a bottle of Moxie.

Post Edited (Kaely) : 7/13/2012 10:37:44 PM (GMT-6)

Posted 7/15/2012 8:39 PM (GMT 0)
Hi Debbie and thanks for the welcome. Yes New Zealand has some pretty stunning scenery and I'd like to think we're a mostly friendly bunch down here. Are you taking Nortrip at an antidepressant dose (75-150 mg) or a help with pain and sleep disorder dose? The psychiatrist I'm seeing increased mine to 100 mg at night in the hope it would help with the pain as well as the depression but on the whole it's done squat.

Hey Kaely. Yes marmite could be called an acquired taste food. I'm not a huge fan but it's okay if spread really thinly. Some ppl spread it thick. Ugh! I'm trying to remember if I've drunk grape juice but my memory is on holiday at the mo so who knows! lol

Meg
Posted 8/2/2012 1:26 PM (GMT 0)
Hi meg in in NZ also ,im in Chch aka -shakey town ;)
Posted 8/3/2012 4:03 AM (GMT 0)
Oh gee, MegNZ, I just now saw this! Sorry. I'm taking 30 mg of Nortriptyline a night (help w/the pain and sleep disorder dose.) I'm sorry the higher dose hasn't helped you more.

Or has it by now? Hope you're doing better -

Debbie
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