Is there light at the end of the tunnel

Hi there!

If you see the light, run in the opposite direction, it's a train! Just joking. 

I've been sick all my life (35 yrs...) and have been through a lot of different ideas. Didn't enjoy pregabalin or similar drugs either but on Thursday my doc put me on tianeptine and I haven't experienced the dreaded 'zombie effect' so far, so I'm hopeful (the drug was tested for FM in Spain in 2007 and proved effective but there haven't been further studies to my knowledge). 

That's got me to the second point: self-education: I've been reading scientific research papers, dietary advice (from serious sources, to be on the safe side). Some symptoms like irritable bowel syndrom and digestive problems can be alleviated by gluten-free, no ready-made food diet. For pain my doc prescribes Tramadol (which I take only occasionally). And I believe the biggest help is pacing oneself and healthy, stress-free lifestyle.

Good luck!

U were lucky to even to have a rheumatologist me i had a supply nurse mine couldnt even be bothered im pn zapain and morphine cos im in so much pain to be honest if it wasnt for my doctor i wouldnt have anybody helping me its very annoying when diagnosed with fibromyglia they dont want to know im taking one day at a time dont think theres a light at the end of tunnel for anyone suffering from this

At the risk of sounding flippant - due to government cuts the light at the end of the tunnel has been turned off! Humour is about the only unaffected part of my body. Now the better news - once you learn how to pace yourself (still learning to perfect this one myself) things seem to be easier to cope with. If you are not familiar with the spoon theory have a look as it is a useful tool  You are still in the early stages of getting used to the label and getting used to the new normal.  PMA (positive mental attitude) was the only help my consultant gave me before discharging me as apparently my local hospital do not offer appointments to fibro suffers.  There is plenty of help and support here from the other forum users both for the good and the not so good days. Hang on in there you are not alone.  Foot cramps and insomnia are my today's symptoms who knows what tomorrow brings. Tomorrow is a mystery to all of us fibro suffers or not.  Good luck and hopefully the medication will kick in, if not please see your GP and get a different med as it may take a while to find the one best suited to you.

Welcome jrichards you will find much knowledge, empathy and encouragement..on this forum..poor you, being told that by your doctor, well sorry to say to this Dr, but there is heaps you can do. There is real light at the end of the tunnel...I'm testimony to that...My med is Amitriptilyne 25mg ore night before bed..it works amazing for me..good nights sleep, no pain...or muscle spasms/cramps..it's my miracle drug I guess..I've been on it for over 16 yrs, no increase. Side effects. Dry mouth in the morning restless legs-.only sometimes in bed. It dies take about 2 months to settle in..you can feel like a zombie the next day for a week or two...but this really depends on you and your dosage.....I only get flare ups of the Fibro now....they can be bad..but I can handle them....sleep is great for handling anything that Fibro throws at you the next day...also and most importantly less stress is the key to living with Fibro..it has taken some of us over 20 years of differing symptoms before we get diagnoses, I remember when I was diagnosed after 0ver 15 years of pain etc...it was like a real celebration..it finally had a name..and was nit in my head after all....many people on here have had the sane experience...but once you know what it is you can start to deal with it and reclaim your llife....you must take controlled of you health jrichards, wrap yourself in caring loving and empathic support, if there is anyone who doesn't care...drop then off your list..you really don't need anyone negative around you..Fibro whith all it's issues are negative enough...I have been really blessed with this in my life...people/family that I have had to not bother with might be sad but that doesn't make be bad and if they change fir the better I just move my boundaries a little and ket them in...just putting healthy boundaries up...hope you have a lovely day..God bless you...:-) xxx

Hi Jrichards

Like all the others have said it's all really trial and error.  Everyone has their own experiences.  One day at a time and trying to stay poisitve. Being positive is the key thing try CBT (Cognitive Behaviour Therapy) as it helps the mind to be mindful.  Although it doesn't take the pain away it helps your mind to deal with life on a day to day basis and also with the breathing techniques that are taught too can be helpful.  Ask you GP for a referral to CBT.

Good Luck !

Morning. Its a very dim light if you continue taking Pregabalin. I were diagnosed nearly 4 years ago, and the Rueumy put me on them. I too were like a zombie struggling to make conversation sluring words saying wrong things head felt as though it were going to explode, put on loads of weight,felt as though I were drunk all the time. Asked my doc to take me off them, he refused and said they were ok. So I thought its my body I will wean myself off them.Took me a few weeks as you just can't stop them directly, I fell much better without them and lost weight as well. All I take now is Morphine.

Sorry to hear of the discomfort you're in jrichards.  I believe I too have fibro, some days are worse than others but it's so difficult at times to do stuff and the pain is exhausting.  My GP did blood tests and would only comment 'theyre fine' whatever that means. He was loathe to diagnose fibromyalgia.  Having read your post and others like you, it would seem I won't get any better treatment whether or not it's formally diagnosed, the end result is pain meds or anti depressants, none of which have a great deal of effect to be honest.  I'm trying meditation and mindfulness and light exercise but it's hell on earth some mornings when I cant move at all for the first hour after I wake up and have to wait for the pain to subside.  What the hell causes this horrible affliction and why isn't there a proper treatment plan?

have any of you tried getting tested for food allergies?  that was the first thing that happened when i saw the first rheumatologist.  he asked how much coffee i drank.  none, i'm mormon.  soft drinks with caffeine...very little.  chocolate?  well, back then i ate a fair amount about once a month.  he took me off that and tomato products and said i could try those again after the next appointment and see if my symptoms changed.  there was a big difference!  big enough to send me off to have the skin prick testing where i discovered many food and enviromental allergies.  when i avoid those triggers and get enough sleep, my fibro is almost in control.  stress kills me and weather fronts do, too.  when IBS was added to my list i almost bought stock in charmin but if i had that kind of money i wouldn't be working in the first place.  at least generic drugs are still affordable on my husband's military insurance.  (thanks U.S. air force!)

I stuck with the side effects started on 150 mg a day until after several days was takimg 150mg x 4 times a day eventually side effects wore off and am better taking it than not.  It is not a cure but it helped me lead a better life.  We are all different in what works for us all you can do is try it give it your best shot and see how you feel in a few weeks.

 

I had scans blood taken xrays even a physio wverything ok except physio ending it cos i was in pain and he said hecouldnt go any further u mention the term fibromyglia and everyone looks at you like if u r making it up wish they could get doctors to treat this as a serious medical problem and help people cope with it my doctor doesnt know what it is fully