Please help me fibromyalgia - Fibromyalgia Acti...

Fibromyalgia Action UK

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Please help me fibromyalgia

Sheetal1985 profile image
14 Replies

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?

14 Replies
RayB profile image

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.


Sheetal1985 profile image
Sheetal1985 in reply to RayB

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.

RayB profile image
RayB in reply to Sheetal1985

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

Skylane2 profile image
Skylane2 in reply to RayB

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

RayB profile image
RayB in reply to Skylane2

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.


I agree some physio does not help but stretching does..ask if there is any hydrotherapy within easy reach exercise in warm water has proved good for many.

Your meds are the typical ones being prescribed for fibro,if u find pregab not working then ask about conventional pain relief like co codamol or codydramol, amitrip will help u sleep but can make u groggy each morning if u find that happens then take it earlier in the evening so it has kicked in by bedtime,,beware not to drive doing it this way. Write down a typical day when you go to see a consultant show areas that hurt the most like my muscles don't like me to scratch an itch the area is so sore after. I have trouble climbing stAirs my legs feel I can't pick my feet up high enough to reach a step..anything else I can help with just ask.

Sheetal1985 profile image
Sheetal1985 in reply to

This is very helpful, I will try and find hydrotherapy near me. My muscles in my frontal neck going to my both sides of jaw like very tight strings that are most difficult. I am still young 38 but feel symptoms of 80 years old. Thank you for your help and understanding. Wish there was a magic wand.

RayB profile image
RayB in reply to Sheetal1985

About your friends,, don't try to convince them,, it will only frustrate you more,, 18 years I have had this. I walked away from the complications of life and that included family politics to the point that only one family member even has my phone number or address. If you are not able to join in with the requests of friends you have to say sorry not tonight,, keep it simple,, you have to get to know what you can manage and what hurts you,, your limtis.

All stresses have the same effects on our bodys!

Best Wishes, Ray

in reply to Sheetal1985

for your jaws-- tuck your chin well down on your chest place thumb on chin centre and push back hard, hold you head firm so as only to move neck- move head side to side slowly in this pose too you should feel some stretching--hope that helps.

Madget profile image

Like your other responders I too find intermittent fasting (only eating in a four hour period in the day), avoiding stress and making sure that your sleep hygiene is good all really help. Swimming also is a gentle exercise that can help you stretch and work your muscles without your body weight my gym also has a hydrotherapy pool which is lovely and helps my pain no end. Good luck with your consultation I do find that doing the above helps more than drugs x

Funkyfaerie profile image

Hi Sheetal,

I have been diagnosed with fibromyalgia, but to be honest as RayB says I think mine is stress.

I have exactly the same symptoms as you have, exactly! And for just over 5 years. I get upper back pain, puan in my shoulders, neck, jaw. It all makes me feel unbalanced and sometimes nauseous.

I have had every test and scan imaginable, all clear thankfully, but hasn't made me feel better. I have gotten to the point now where I fear my symptoms every day now as they make me feel ghastly all day. However, I do have a few good days, distraction is the key. I have tried talking therapy, physiotherapy, I do try to keep my diet good, but when I'm miserable with the pain it's hard.

I have however, recently booked myself in for a course if massage. Just had the first one, I felt a bit sickly afterwards, and the next day I felt worse, but the second day I felt wonderful, just normal, so I am having another in rwo weeks and then maybe once a month, it's not cheap but then I figure I would spend that on my car without thinking

It moved all those tight muscles, it was agony and ecstasy. I must keep thinking positive about this, as something has to help eventually.

I can't remember the last time I woke up with the joys of spring and not hurting.

I have anxiety because of the pain now too, but keep on pushing through the days, because we have too.

I do hope you find a solution soon. X

chrissy30 profile image

Sorry to hear you are suffering so much and I can relate to constant pain as my husband and I suffer from Fibromyalgia. Have done for decades now. Horrible disease as I have also severe osteoporosis and migraines and arthritis with ingrowing eyelashes in my right eye. I gave up on medication as I know there is no cure for Fibromyalgia but I try to be positive and not dwell on things too much. I take a co-codamol now as I ditched out all the heavy drugs like pregabalin which made me sleepy and miserable. Even had massive doses of morphine by injection and liquid but to no avail and too many side effects. Tried other drugs as well but waste of time and effort. I find now I get bad days and not so bad days but being a wife I have plenty to occupy my mind even if I feel like death! Thankfully God has given me a sense of humour and at 71 with my poor husband who doesn't always handle his pain well I have to try to make him laugh. Personally, only for myself, I wonder if we dwell too much on pain that can make us worse or pull us down. I'm also blessed that I'm a pianist/keyboard player but only for my own enjoyment and I find that music is a great help. Yes I overdo it sometimes even playing the piano and then end up in agony but at least I feel I'd done something constructive. Also I'm blessed in the sense I'm a retired mental health counsellor so my life has been around people with illness both physical and mental and often I've been a carer in my own personal life. Sometimes we have to just soldier on and get through one day at a time. That is how I do it and think 'I shall feel better tomorrow'. Ok it never happens but at least I make myself stay positive. Let your pain specialist diagnose and just tell him how you feel with pain and where it strikes as Fibromyalgia is a curse well and truly and doctors do understand. For those that don't tell them to go and jump and find another doctor. I do hope you will find answers to all this and it's good to get checked out. I found recently I have an enlarged heart on my 70th year MOT at my doctor's surgery. Oh well something else to add to the list. LOL! My heart does go out to anyone suffering from illness and I pray and answer will be found one day for us Fibromites. God bless.

klr31 profile image

I think you need to check your thyroid and get the results - don't rely on the doctor telling you that they are 'normal'. Also, check iron, folate, ferritin, Vitamin D and B12 as they help absorption. It sounds like you might have Hypothyroidism so check your antibodies as if you have those you have Hashimoto's. Replacing what you don't make with levothyroxine can help you feel better. Good luck.


Sheetal1985 profile image

I have been checked for thyroid, b12 etc. They are normal.

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