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Terrib - April 3

Hi all

I'm new to this forum. A little bit about me. I'm a 29 yr old female. I was diagnosed with FMS in 2008 - just shortly after I was also diagnosed with post traumatic stress (resulting from a nasty incident involving a neighbour, but that a whole other story in itself). I would now consider myself pretty much fully recovered from the PTSD (after about 8 months of intense therapy), however the FMS seems to just keep getting worse and I keep developing new symptoms.

I'm not on any medications. I was offered low dose anti-depressants to aid with my sleep, however I opted to try and go without. My sleeping is now better under control, and I have just started a light exercise regime to try and get rid of some of the extra weight I've put on since my diagnosis - so far no bad effects from the exercise which is great.

Looking back on it, the early signs of FMS were probably there back around 2005. I have had a gazillion tests done for all sorts of things, but most GPs just shrugged their shoulders and said "I don't know". One GP then did an ANA test, and I had a positive speckled pattern, so the idea of lupus was bandied around for about 12 months, but the test was result was low titre and not conclusive for lupus. It wasn't until a new doctor looked at all my history and referred me to a rheumatologist that I finally got my diagnosis. I thought the guy was a quack doing all this poking and prodding - but then he said "you have fibromyalgia". I'd never even heard of it.

Like most FMS sufferers I have my good days and bad days. However lately it seems my flares last for much longer (up to 2 months), with shorter breaks in between. I still manage to function pretty well, though the absolute worst part is the fog. I used to have a very sharp mind and excellent memory and was a superstar at work. These days I feel like I'm "faking" my way through things by being able to cover up my stuff ups because of my confused old head. I've not really told anyone at work about my condition, for fear I might not get any promotions (somehow I just got promoted recently too).

I used to just chew through paracetamol until they no longer had any effect. Then I found an OTC paracetamol / codeine combo. Initially 2 tablets and I could pretty much breeze through. Now I'm hitting the daily limits and it doesn't have any effect anymore. I try to have a couple of days break when the pain isn't so bad, just to try and avoid tolerance issues.

Like most, I am concerned about going and getting a prescription for stronger opiods. 1: I don't want to admit my condition is getting to that point, 2: I'm worried about how well I will function at work if I'm "narc'ed up" on stronger pain meds, 3: I'm worried about starting a never ending cycle of needing stronger and stronger meds before I end up bedridden from constant pain and; 4: I'm worried my doctor will think I'm just seeking pills to pop and won't take me seriously.

My main issue is that high levels of paracetamol can be very dangerous and cause liver failure. I'm hitting the limits on a daily basis, and have been known to take more than the recommendation. The codeine in each tablet is only 10mg - and I would prefer to increase the codeine intake to get better relief, without the dangers of taking so much paracetamol.

I don't talk about my condition much with my family. About 1 month after my diagnosis my dad was diagnosed with stage 4 bowel cancer. He's had countless rounds of chemo, radiation and two massive operations - the last one being just 2 months ago. What I am going through pales by comparison to what my dad is goind through, so it seems trivial for me to talk about my FMS with family, so at times I feel very desperate, depressed and isolated and feel that no one really knows what is going on with me. I just beef myself up and try to soldier on and hide my problems from everyone.

Anyway, that is probably a long enough intro from me! I am very glad I found this forum where people understand and relate to what it's like to live with FMS.
Terri

 

Noca - April 3

Welcome to the forum! The degree of suffering of others does not negate your own suffering.

You sound like you are using Tylenol 1's and live in Canada or Europe. Tylenol 1's are 325mg of Tylenol and 8mg of Codeine. You could always try Codeine-contin. They come in 50-100mg pills of Codeine that last 12 hours long. Ask your doctor about that.

You could also get referred to a pain clinic where you can learn other methods to cope besides just meds, but they still give you meds.

Hope to see you around.

 

Fantod - April 4

Terrib - Welcome to the forum!

I think that you should seriously consider being on some prescribed medication. You are absolutely right to be concerned about your intake of OTC medication. Has anyone done bloodwork to check your liver function lately? You would certainly have less swings in terms of flares if you were on a prescribed medication regimen as opposed to self medicating. I'm not sure I understand the difference between what you are doing and taking prescribed medication anyway.

There are options other than opiods which should be explored. Cymbalata, Lyrica and Savella are the three main prescribed medications used to treat Fibromyalgia. I take Cymbalta which is an antidepressant that treats both the pain and depression that accompanies Fibromyalgia. Savella has been used for years in Europe and was approved for use in the US by the FDA last year. You should also be tested for a vitamin D deficiency as most people with FMS have that as well. All that is required is a simple blood test.

And finally, you should also be on a sleep aid like Amitriptyline. FMS interrups the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. If you are getting more restorative sleep your brain fog issues may lessen.

I am very sorry to learn that your father is so sick. I will keep him in my prayers. You are not alone with your illness. We are all here to help. Feel free to vent, ask questions or just check in to say hello. Take care and God Bless.

 

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