Hi guys, I feel that I have no quality of life.
I am in constant pain for 5 years in my shoulders, upper back, lower back, neck, frontal neck going to throat, upper part of chest, elbows, jaw. I feel tired even sleeping for long time, my brain freezes, lost two jobs due to constant make me difficulties to concentrate and it takes longer to process the information. I had blood tests, Scans normal for full spine d brajn. Seen many nueorologists but no diagnosis yet. Seeing pain specialist on 24th Sep.
I am on amphtryiline 50mg which helps and pregabalin does not work and make my head more groggy.
Physiotherapy does not help much.
What can I do? What can I say to pain specialist to determine if I have fibromyalgia?
I feel hopeless as I am 38 years of age. Long time to retire?
Sheetal1985, Welcome along!
Try and rember that you are going to the dr to see what the problem is.
It sounds like fibro,, but Dr's seem to resent anything other than explaining your symptoms and doing their tests.
It is very easy to suspect you have the condition, as trying to find out what the problem and do ease things just takes over.
I really think it's best to let them do the diagnosing and remain silent you could ask what they think,, If you must you could ask directly if they think it is fibro but you will probably just get an answer along the lines of "it is a diagnosis of omission and they have to rule anything else out first.
Waiting is frustrating but at the end of the day you will just be treated with the same medications,, a diagnosis is not something that changes the problems that you will live with,, there is no magic,, Sorry but thats the way it is.
RayB - Thanks for coming back to me. I will let pain specialist do his checks, I am very frustrated that there is no cure, especially my jaws really hurt and constant pain in both sides, dentist cannot help either. Is there a place where I reach in any part of this world to bring dow n this pain, it becomes unbearable and friends think I am just flaking it.
Sheetal1985, One of the most useful things I can say is "Stress"
Few understand that there is three types of stress,, mental, phisical (what you ask your body to do) and systemic (what you put into you body and what you fail to but into your body also the environmental factors come into play)
There are some cross overs but that is the three basic types.
I can only tell you what I do,, and I do not use medications anylonger,, in fact I seen the meds as more systemic stress as you are asking your liver to break them down.
Watch hydration,, dyhydration more systemic stress.
I now keep my diet very simple, raw and organic where possible,, I no longer eat any animal products. I only ocasionaly eat beans or grains,, perhaps once or twice a month and never wheat, rye, barley or oats. I never take tea, coffee, alcohol,, only herbal teas and no sugar.
I never eat after around 4 or 5pm at the latest ,, night time is for resting not digesting,,,, more stress phisical and systemic.
Try and work out what gets you going or who gets you going and decide you are going to change how you react, to the stressors. So if it is driving then change how you drive,, leave earlier,, let people in infront of you,, be nice,, smile,, walk don't rush.
If it's the kids it's much the same you got to change how you react,,, you do this firstly by realising what is going on,, how your reacting. You say to yourself,, my reaction is hurting me. This is not an overnight thing but it gets easier with practice,, auctualy it's surpriseing how quickly you start to get things together,, it's nothing more than changing the habbits you have aquired in life.
Most of my diet concicsts of fruit now and usualy only one fruit or type of food at a time, so If I eat apples I eat apples,, If I eat grapes it's just grapes. People will inevitably ask me where I get my protein. Intrestingly my bloods are better than ever for as long as I have been living like this. My resting heart rate is now down from high 90's to mid 60's,, my BP is now aroung 125/63. These I can only atribute to diet.
I now also leave very long periods between each meal I usualy only eat once now in a 24 hr period.
To add to my madness I will not have a wifi router broadcasting in the house,, I use ethernet cable,, I will not have a mobile phone,, more systemic stress.
Perhaps a little hard line for some as they are so used to living on fat,,, bread,, sugar,, pizza cheese,, chips and generaly a very stodgy diet. In fact I am horrified looking at the average shopping basket.
I refuse to call myself vegan as it is such a political term and my choice has nothing to do with animal welfare.
As I say this is just what I do,,if you want to do a bit of reading on it have a look at the mucousless diet you will find lots of information on it online and can download Professor Arnold Ehret's books for free,, intresting to say the least.
Best Wishes, Ray
I like your suggestions but I would add he needs to eat these small meals 4 times a day for blood sugar levels to remain normal. I have followed the vegetarian diet of the Seventh Day Adventist Church in the past and its the healthiest I’ve ever been. They advocate exercise of some kind like a walk everyday. They are the longest living group of people you’ll ever find the women I know in their 90’s still manage to make it to the gym every day. You’re right about the stress but I think everyone should have a basic cell phone for emergencies. Well I’ve had my day but one thing Sheetl1985 might check into is a thyroid check. I have Hashimoto’s thyroiditis and felt much the same way he does now 3 years ago,but then my thyroid was so low my hair was coming out in chunks and I broke out in hives every time I put something in my mouth, I hurt so bad, I felt like dying. It was my thyroid failing! There are good books out on Hashimoto’s and chronic fatigue syndrome. It may be he has The Epstein Barr virus
Intrestingly my blood sugars have also improved by the extended period of no foods but it in not something one just wakes up one morning an starts, it takes a bit of reading and looking at the experiance of others,,, starting to change slowly by ommiting certain foods,, with me it was all gluten containg grains and dairy first,, then soy and all ohter aditives. Meat went out the window later and I then reduced the freqency of nuts seeds and pulses,, nuts and seeds I almost never touch now and pulses only very ocasionaly.
Nutrition was a big part of my degree many years ago and I can now say from my experince of this way of life that I have had to question the truth of my studys and learning and I have had no option but to dismiss most of it as utter fallacy. Mainly the protien theorys I now think protiens are very over regarded in the diet.
The way I think about diet now is that we are primates,,,, and I now eat more like them.
It is a fact that those who eat megerly tend to live longest.
I omitted speaking about excercise as it is such an area of contention with people with fibro,, I really do not tollerate excercise at all so I am probably a little coloured with my own experince but I do try to get out into daylight daily sadly I'm not always sucessfull in that regard.