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Just found out I also have Fibro any Torontonians??

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Posted 1/18/2014 1:41 AM (GMT 0)
Hi,

My name is Nisha and 2 days ago I was diagnosed with Fibromyalgia. Although I am glad that finally after many years of pain and months of testing I know what it causing all my symptoms. But, I am also very sad that this is what i have.

I had a friend whom I lost touch with years who was going through this and saw what it did to her.

I have been researching and there isn't much of "support" here and was wondering if there were any other FM members who live in Toronto that may know of a good doctor who has better knowledge of FM or support groups that I can go and attend? Don't get me wrong both my doctors are very helpful and great but they to are not very familiar with it as they don't have very many patients who have this. (at least they are being honest).

Also I am not on any medications yet (but have pricriptions) as I am very leary about taking them and would like to as you all what type of response you got from Cymbalta and lyrica? Are there any alternative remedies that can help?

As well for depression anything alternative?

I don't want to take something and then find other side affects giving me more trouble.

And my family is there a way for me to explain what this is. For along time I have not been able to share my pain with anyone as the last time I spoke to them and tried to explain why I couldn't do something we had a fight.

Sorry for the long winded post and so many questions, but just trying to get my head around this.
Posted 1/18/2014 3:07 AM (GMT 0)
Hi Nisha...just wanted to welcome you to the fibro family and let you know you are among friends here. The group does understand, is supportive and caring. It takes time to fully accept a diagnosis. Everyone has their own time table to miourn the loss of good health. We are here for you, so post away :)

Meds are trial and error for most of us. what works for one may not for another. I take Savella and a muscle relaxer for fibro. I found that daily walking is very beneficial along with doing gentle stretches during the day. Using the moist heat microwaveable heating pads work wonders for achey muscles.

If you haven't already, check out fibro 101 on the top of the page...some great info including The Spoon Theory...share that with your family and that will help them ubderstand some of what you are dealing with.

I'm not from the Toronto area, but I'm a regular here along with lots of others who genuinely feel like this forum is family. We truly care and support one amother. I'm glad you have joined us.

Hugs, Robin
Posted 1/18/2014 3:41 AM (GMT 0)
If that is long winded then most of us are in some trouble... ;)

Here is my stance on meds: if you can do it without, continue. If you find that your symptoms are crowding out your quality of life, find a balance where you can use meds with as much minimal side effect as possible. At some point in your fibro experience, you may come to a fork in the road where you decide you cannot deal with the pain, fatigue, IBS, depressions, whatever. If you're not at that fork yet, don't borrow trouble.

I personally take as many meds as it takes for me to feel that I am living in a standard that I am comfortable (eh, proud) with. I didn't work for a few months and I really didn't like who I was becoming. So I worked really hard to find meds, routines, and doctors that could support my chosen lifestyle. (I work FT and volunteer A LOT.) Right now I want this lifestyle, so I take meds. There are a lot of folks on this board that don't have the option of working -- or the options to have access to meds meds whether they want to, can afford it, whether they work or don't. My point is that meds can be a wonderful bandaid and we are lucky to have options. That said, you haven't tried them yet so they might not be an option.

Now that my lecture of meds is complete (LOL), welcome! There are a lot of great resources here; many people have been struggling up to or past 20 years. That blows my mind since I got an unheard of early diagnosis and Fibro has been such a burden that I can't fathom anything past five years...yet. Like AA, keep coming back. If you're curious about anything, even the TMI stuff, just ask. I'm sure someone has an anecdote to share. :)
Posted 1/18/2014 6:57 AM (GMT 0)
Nisha,

Welcome from me, too. Sorry you have to be here, but - we really are a great support group - and, as Robin said, a kind of a family. It's been a lifesaver for me. I'm one of the 20+ yearers Anna mentioned.

When I was first diagnosed, my new doctor (who's still my doc today) gave me a prescription for Nortriptyline, an antidepressant, to help with sleep. He said until that was under control, nothing else we tried to do would do much good. And he was right - it did help, a lot. I always have pain, but now it's usually background noise instead of big and loud, front and center. I hope you do find a doctor who's knowledgeable - that's SO important.

Anyway, when I first got that prescription, I didn't fill it for over a week - kept thinking it would make me a different person - reallly didn't want to take it!

Different things work so differently in each of us (my brother got horrible dreams from Nortriptyline, and couldn't take it.) You may have to go through a few to find your own mix. Or maybe you will be one of the lucky ones who don't need any!

I also take Gabapentin, which is very similar to Lyrica. I take it for nerve pain (damage from a ruptured disc.) It does help me, but causes some swelling of my legs and eyelids :( But it's worth it, at least for now.

I hope your docs told you to keep moving! Not doing that can cause us a world of trouble - (talk about stiffness!!) Of course, we do have to be careful not to overdo - but gentle movement helps us a lot,...again, the right balance is different for each of us, and it doesn't always stay the same. That's one of the trickiest parts, knowing when enough is enough. Listen to your own body.

I hope you'll keep posting - we do care!

Debbie
Posted 1/18/2014 10:04 PM (GMT 0)
Thanks for the warm welcome.

Right now my pains are bearable (actually I have kinda gotten use to it) I will most likely try to avoid the meds and just concentrate on alternative ways. My DH who use to practice back home is looking into Ayurvedic and Homeopathic remedies to see if those will help before I take the plunge and become a "druggy". LOL.

My biggest issue right now I think is Sleep. I have tried melatonin and it hasn't helped much. Hopefully Valerin will work.

I am truely greatful to have found this site. I can also look at the Celiac forum and see what suggestions they have for my DD.

I wanted to ask has anyone tried a cleanse? I know of a few people who have different illness have done this cleanse and it seem to have helped them and they swear by it.

Nisha
Posted 1/19/2014 12:33 AM (GMT 0)
Hello from Montreal :)
Posted 1/19/2014 1:05 AM (GMT 0)
Welcome from London: I have just recently been diagnosed with FM and I have been reading everything. As per Drs there are some tat deal with FM and I highly recommend finding one that knows about this so called syndrome. There are also many articles on youtube. Dr Kevin white is a rheumatologist as well as dealing with fm, from London He was a skeptic himself but researched and actually is a great advocate now and he also has written a book. I have been dealing with various symptoms for years. I think I have had everything I own xrayed, my feet are so bad I was having cortisone shots I will not take any more cortisone. Tramadol made me violently ill and I cannot take Cymbalta. I have a friend who started taking OmegaXL 3 months ago as well as condritin (spelling?) She says it has helped greatly, so I am going to try that. I cannot deal with the back pain and headaches. Also may I recommend to everyone on here. When you see a Dr get a copy of the report. The Drs are notorious for leaving things out and adding their own version. I just got a copy from the specialist where he said I self diagnosed tendonistis in my right arm, when actually it was my family Dr
that had diagnosed it so I am going back to get the record straight. This can also be conflicting when dealing with insurance companies.
Posted 1/19/2014 7:33 PM (GMT 0)
Well thank you. I hope to make some wonderful friends
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