A year ago I could barely get out of bed because the pain and aching was so bad, I had no energy, my brain wouldn't function, I was depressed, whatever I did I couldn't stop my weight increasing and I felt like the 'other' bunny in the Duracell battery bunny adverts, my battery had run down and I had stopped, while everyone else was hopping along quite merrily.
The doctors diagnosed me with fibro and told me to live with it and manage it. I refused to give in and sought answers. It wasn't easy especially when I was feeling so ill. Being told by one doctor when I said I couldn't lose weight 'There were no fat people in Belsen" didn't do a lot for my depression.
I refused to accept that for the rest of my life I would be in this state. I wanted answers. I was willing to accept that I had Fibro, but what I wanted to know was what was the cause, why had my body shut down and stopped functioning. And my theory was that once I had found the cause I could start treating it and hopefully return my body to health
.
Now I walk for an hour every morning, I am sleeping between 5 -8 hours a night. I still ache but not so much and I feel I am on the road to recovery. It has been a roller coaster of a ride but I have refused to give in.
I visited lots of doctors who did tests and confirmed the Fibro diagnosis and offered me sleeping pills and pain killers. I kept looking, visiting two specialists in the UK who also confirmed Fibro. After much research on the internet my journey took me to an endocrinologist who diagnosed me with Hashimotos Thyroidism, a condition where your immune system attacks your thyroid and stops it functioning. He said I had probably had it since my first pregnancy 28 years ago. I started on thyroxin and for 2 months I was great and then my health nose dived again and although they kept increasing the thyroxin, I was not improving. Eventually I was told I was taking the correct dose and I was fine. EXCUSE ME I FEEL LIKE S**T.
So it was back to the internet and looking for answers.
Mercury Poisoning - symptoms aching and fatigue - I had my fillings all removed.
Glutton Intolerance - symptoms aching and fatigue - I have cut out as much gluten as possible.
Then to address the thyroid problem. Everything on the internet says to change from thyroxin, if it is not working for you, to natural thyroid but none of the doctors I visited or the endocrinologist agreed or would prescribe it for me. In January this year, I found a medical doctor and naturopath who would prescribe it and I am now so much better. I walk for an hour every morning, I am sleeping between 5 -8 hours a night. I still ache, but not so much and we are still increasing the dose, so Im hoping the aching will stop eventually. She also gave me progesteron and oestrogen to help balance my hormones.
For years I have been visiting the doctors because I was so tired and they kept testing my thyroid and telling me I was 'normal'. In the last year I had three thyroid tests by doctors who told me I was 'normal'. I eventually bypassed them and made the appointment with the endo myself. Had I not done this I would still be in a downward spiral.
I am not saying this is the answer to everyone's condition but what I do want to say, is don't accept what the doctors tell you. Research on the internet, change your diet, look for other
reasons and causes. The body does not just stop working and shut down - there has to be a cause, a reason.
My journey has made me realise that the doctors do not know, and how can they. there are so many illnesses and causes, they can only do tests, interpret the results as they have been taught and if needed refer you to a Specialist. They kept telling me my thyroid was fine when it clearly wasn't. For those that think they might have a similar condition check out stopthethyroidmadness.com/ .
There is hope, but I"m afraid you have to make it happen yourself. I will let you know how I get on in the next few months and I wish you all well in your journey to good health.
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Lizzie559
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This is very inspiring, I have been on a journey myself, I found for myself that I have positional cervical cord compression (PC4) and I also know that I am intolerant to many medications and they make things worse. So I just kept learning more and more on the Internet, reading books, going to lectures, until I understood what my body needs. I now am having specialist acupuncture for my Interstitial Cystitis, did a holistic massage course and give myself a massage every day, learned how to do trigger point massage which really helps with pain, learned meditation and I am doing advanced meditation course now, and am learning Alexander Technique. I am improving, although as fast as I get on top of one disease the pattern has been that I have been hit with another, all these diseases are linked inasmuch as if you get one, you are more likely to get one of the others, but I keep on persevering and I am getting on top of them all, I am winning and taking my life back. My own experience of doctors (even in pain clinics) is that they are not good at dealing with chronic pain and other distressing symptoms, and the more you learn about your disease, and the more steps you take personally to overcome the problems, the less your symptoms intrude into your everyday existence. These diseases are real but they do have an emotional/ psychological component to them, I am not sure if they are part of the cause or part of the reaction to the initial confounding symptoms that initially seem more than you can imagine living with. So I was so happy to read of a fellow sufferer who has been on a similar journey of self discovery, as it shows I am not alone.
I found it very difficult in UK - I went privately to a neurologist who told me that everything that was happening to me was being caused by myself (cost £200 for that useless information) and he did a brain MRI but not a neck one. So next I went to the NHS, the Mineral Water Hospital in Bath, where they took an xray of my neck and told me that there was nothing wrong with my neck so I didn't need an MRI. So when I came to Dubai where we spend part of the year, I found out where the best MRI scanner was and booked myself in, paid for it, and found I have it. I think the only way you can get it done in UK is by sheer persistence. I knew 100% that I had it when I heard the lecture from Dr. Holman and he said they best medical treatment was benzodiazipines because they calm down the cervical cord, and I knew that when I took benzodiazapines I always feel better.
Thanks Jjudith, that's great info. Was the dynamic scanner you used in Dubai then? Did they follow Andrew's protocols for the scans? Who confirmed the diagnosis, the radiologist??
Sorry for so many questions but this is a biggie for me.... Andrew has already confirmed my cord compression from a normal MRI (that's how bad it is) but I have just seen two of the leading neurosurgeons here in the south UK who said that wasn't the case... I'm very frustrated and fairly scared right now that this is the end of the road of me
A German neurologist in Dubai confirmed the diagnosis - he was aware of the Holman study. It was difficult to know exactly what the Seattle MRI bendy protocols were, because they are difficult to contact - no email address on their website for example. But the radiologists looked at the pictures and tried to copy. I also have pathology on a straight MRI, including cord compression in 3 places, quite severe in 2 places, and nerve root compression, which is I guess why I have tingling and pain in my arms, and some loss of use in my left hand. But my condition has iimproved since I have been doing Alexander Technique and taking Clonazepam and sometimes Diazepam. There is the rub tho' - I wish in many ways that I had gone to Seattle for a diagnosis, because unless you are there you are still working blind with the treatment, as there is no-one to take charge of your care and you are having to take charge of your treatment plan yourself - unless of course you have very advanced PC3, when it is obviously a neuro surgery job.
Please send batteries immediately - I would love some!
Most doctors admit that they don't know much about Fibro, and that its treatment consists mainly of management techniques.
The problem is that most of us feel so ill that we haven't the energy to do all this management, and we also tend to slip into a decline of poor diet, overweight and depression, ending up pretty much crippled.
There is also a significant incidence of all types of arthritis among fibromites, which probably does point towards an endocrine/auto-immune component, and certainly makes the situation worse.
What does stand out, though, is that so-called 'expert patients' who find out what they can, who research extensively, and are able to aggressively manage their condition, always seem to remain less disabled and to cope better with this disease.
Some of us have the tools to do this, and they can be varied.
Reasonable income, better support at home, easier home circumstances, less stress from work or child care - all these mitigate in favour of some sort of stability or lessening in symptoms. There are probably at least another dozen factors which I have omitted, but they vary with the individual.
I have fibro and rheumatoid arthritis, and I do manage my symptoms aggressively. I am in the fortunate position of being retired, not well off but with a sufficient income, no arduous responsibilities, and I have a supportive family. There is no doubt that this enables me to look after myself and pay attention to diet and suitable exercise.
The result is that most of the time I feel reasonably OK. Bad days come and go, but I am significantly better than many.
The point is that patients suffering with Fibro need MORE support in the community rather than LESS which is what the present system is aiming towards. More research, more support, more interest from doctors who do tend to use fibro as a 'dustbin diagnosis' because they really don't know what to do other than shove another prescription at us.
Lastly, and perhaps most important of all, comprehensive elimination of any other pathology which may be present - like thyroid deficiency to name but one example.
Hopefully, and for many other disabling diseases, the time will come when treatment is easy and standardised and we shall all be leaping around like the Duracell Bunny!
Yes, I think doctors were part of the stress cycle for me, going to the doctor has become an ordeal because they often aren't really interested unless you have something really easy to diagnose, aren't good at diagnosis which forces you to research for yourself, they then feel a bit affronted by patients who know more about the condition than they do or diagnose themselves. I think they also feel stress when people with fibromyalgia and its many nasty friends keep going back and saying what you gave me last time didn't make me better (or even in my case, because like many fibromites I have paradoxical effects, going back to the doc time and time again and saying what you gave me last time made me a lot worse) because underneath it all they are human and they would like to give you a pill and have you come back to say to them that the treatment they gave you did the trick. Fibromites must present a professional challenge, especially in this era when the medical profession relies on tests rather than listening to patients and taking a good clinical history and doing a good medical examination. For example, I have a really typical myofascial pain syndrome, every single classic symptom, and Chris Jenner of the London Pain Clinic points out MPS is really easy to diagnose clinically, but very rarely is, with many patients suffering for years with the symptoms without a diagnosis, and all the time being treated as someone who imagines symptoms.
The also agree with the financial and time pressures thing when you are feeling so very, very ill. I first became ill after retirement when I was comfortably off. So I had time to research, I had a hubby who dotes on me who was prepared to take all the day to day strain off me, no children or other dependents, and no money worrries. I can see how untypical that is. My son has Interstitial Cystitis and he is devastated at the age of 36, and still has to keep on working and looking after his family, and the only way he can afford complementary therapy regularly is to rely on us to help him financially, which is demeaning to say the least for him, whether we mind doing it or not. So that adds to his stress and makes it more difficult to cope with the disease.
I think with these new health contracts it could be possible for a group of diverse complementary therapists to put their case to GPs for care contracts, as I feel certain that things like massage, myofascial release, alexander technique, etc., could work out cheaper than analgesics, for example in trials fibromites using massage regularly reduces analgesia use by about 35%,
this is very good news. I wish I could find a solution for my on going problems. I sort out my itchy problem as you looking in the internet, reading but it seems so hard with others. I could give a try.
I totally agreed with moffy. Your situation is either help you or make it worse ( which is my case). Have a very young sick child, a husband who seems to care nothing, in a country where everything very complicated (I am in Italy).
I have your attitude and i also admire the fact you gone through every Chanel too.
Lets hope the aching stops !!
I blame titanium and am fighting at moment for a claim from the operation it started from 3 yrs ago.
I have been down every avenue and had every test and you know your own body and self and what your capable of and i am always in some discomfort some way or other.
The last time i saw the surgeon who did my operation was going to take them out a massive operation but i did not care because before the op on the meeting i 'clearly' stated i was allergic to all metals.
Titanium is in many things we use and i avoid.
Also i had a belly piercing in 2009 but when i had done at the time i did not know was Titanium and i was ill and got really infected with it, then after the operation all these things started happening and like you i started my journey to find answers, i finally got told he would take them out only my neck went and this caused many problems and ended at neurologist, Neuro surgeon a brain specialist as more and more symptoms developed.
End of the road they said yet will give me the best help whatever i need!!
I had done some re search and found that Titanium can cause these issues also the fact i had many illnesses when younger and hospitalisation a and they all point to MS (not diagnosed with MS as no lesions at the time a year a go now this month)
I went back to whom piecrced my belly and was told Titanium!!
Its the shocks like lightening that what i had when i had the piercing done and it almost vanished in my belly as it got all so sore and inflamed .
This is arguments i have had as its inflamation and feels like fluids in me and the swellings the poor circulation and much more.
Neurologist gave me other things and of course i walked out not believing that any of this is causing my issues. I had all my life it does not just start causing major trouble consistently out of blue!! It all only started after op.
because of my other condition i cannot have my neck operated on as death or paralys 90%
I will never give up and i will prove i am rite like i have done before on a couple occasions!
i have not been able to afford the blood test for metals privately yet but its a strange thing that the Dr's do not provide this Service which i believe they can offer a million other tests but not the main one for the incident.
So i am awaiting to see the hernia surgeon to discuss removing as he could not do because my neck went and placing your head on chin 20 mins is a no go for me .
The big issue for me now is will he still perform surgery ?!?
I put a claim in for Medical Negligence as it was hell and being rushed in and 999 and not getting anywhere still and would of still fobbed me off but i was rite!!!
How were you diagnosed with a sensitivity to Ti? I have had the tests by MELISA which showed a slight sensitivity but had to go ahead with cervical disc implants anyway due to a high risk of paralysis in the event of an accident... There is a possibility that sensitivity can go up significantly once a metal is introduced into the body too...
The problem I feel is that doctors are in the sickness industry and not the wellness industry. Once I learned how to take control of my health naturally my health turned around and am off all but one of my many prescribed medications. For the first time in many, many years I am well and full of energy. I just gave my body the tools it needed to regenerate and heal itself.
All very interesting and worth a good think as I'm at the end of my teather and getting more immobile and ill with each week that passes - very interesting the titanium thing as I can genuinely with hindsight pin point the start of my illness to a huge jaw op I had in 1990 in which everything that could go wrong did and I ended up MRSA I have always believed maybe the MRSA to be the root cause but now thinking about all the metal plates and screws I have holding my jaw together and maybe this is the root cause ?? I just want to turn the clock back 25yrs and be “me” again !! ........... There needs to be more research within the NHS we all plod on .... Hugs to all x
All very interesting and worth a good think as I'm at the end of my teather and getting more immobile and ill with each week that passes - very interesting the titanium thing as I can genuinely with hindsight pin point the start of my illness to a huge jaw op I had in 1990 in which everything that could go wrong did and I ended up MRSA I have always believed maybe the MRSA to be the root cause but now thinking about all the metal plates and screws I have holding my jaw together and maybe this is the root cause ?? I just want to turn the clock back 25yrs and be “me” again !! ........... There needs to be more research within the NHS we all plod on .... Hugs to all x
I would tend to think that the enormous trauma and possible infection associated with major surgery is a more significant factor than the metal used. Titanium is an inert metal, and is used in surgery for that reason. Metal allergy is a possibility, but there are so many other factors to consider.
Most people with titanium implants remain well, and most people with fibro have no metal inside them. The relationship between trauma and the subsequent development of fibro is fairly well- established, so maybe we should go there first.
As Lavender says, so much more research needs to be done!
Moffy x
That's great Lizzie. I'm pleased you've found your answers. I have researched constantly since realising that doctors haven't a clue. I've found a good naturopath who has sorted out diet and bought a far infrared coccoon to detox and free up any blocks.
I'm doing all I can for myself to be as healthy as I can be.
The fact is though that this condition is on-going and crashes happen. I don't think there's a one answer fits all here. I definately seem to have a leaky gut which releases toxins into the system. These toxins affect various body systems intermittently. Thyroid being one system. I have worked on it and it sent my adrenal system onto overdrive.
What I'm trying to do is fix the leak and work on the gut. That way all the other systems will rebalance.
Its a very lonely place to be trying to fix myself in the face of other people's opinion, normal society expectations and GP's who are soooo condescending.
I wish I did fully understand why I'm not the same as others. I feel I'm not bad enough to have ME because I don't use a wheelchair. I'm not bad enough to have fibro because I refuse pointblank to medicate with anti depressants and pain killers.....and yet I'm not healthy either and can't work. Family members call me lazy or that I'd be ok if I went to bed earlier. It still smacks me in the self esteem area even after all these years.
What's important for ME now is my own acceptance. I am how I am...I can't change it ....I have to live with how it is for me to survive mentally.
There's needs to he proper research and testing so that we don't all drive ourselves mad trawling through bogus self help and expensive treatments that just leave us feeling the same in the long run.
Yes we have to search for our own individual toxins and try to eliminate them....but self diagnosis of other systems and conditions is extremely dangerous....and expensive......financially and health wise....I've become excited about so many red herrings over the years and become really ill trying to follow them....
Pacing, mental and physical, and finding a good and trusted naturopath seems to be all we can do safely x sorting diet out is essential.
Sorry if I sound negative. I'm not in the best space with all this at the moment x
Hi Lizzie I am interested to find out about the dr you found who helped you. I have looked on the link you suggested and its sooo me. I have been tested for thyroid but all ok, I have also been tested for adrenal which was very low, but GP not interested. I am going down hill and would be willing to travel to see someone who could help me. Best wishes and glad you have found some answers.
Hi, the doctor I found was actually in New Zealand where I spend 6 months a year but I've had a quick look on the Internet and here is a link to some friendly thyroid doctors in the UK. thyroid-info.com/topdrs/uni... Failing this, you need to search the Internet for doctor who practice integrated medicine or just keep searching the thyroid sites for doctors. Good luck with your quest
Thanks to everyone for their posts. This was my story and I hoped it might encourage others to research and question. I did say that Thyroid was not the answer to everybody 's condition but do question what you are told.
I grew up believing that doctors had all the answers. They were people you trusted like school teachers and police officers. So when I was told again and again that I had fibro and go away and live with it, I believed them. I may still have fibro to a minor degree but had I listened to them I would still be almost confined to bed.
Doctors do their best with the time and resources they have to hand. They are bound by how much drugs are and have to stay within budgets set for them. You are given 10 minutes to put your case and they are always running late. They can not know all the developments and advances that happen in every condition and illness. Yes, the health service should have the answers but it doesn't and they will never have the resources to do so.
I have learned over the last few years to accept my limitations and to live within my means. People and frends do not understand and as much as you try to explain, you can see that they do not believe you. It is a very lonely place to be, doctors who don't listen, friends who can't understand and yes a husband (who doesn't do illness) who tried to cope but resented the fact that life had changed dramatically for both of us.
BUT this is my life and had I not questioned and researched, I would not be enjoying the life I do now. I still ache a lot and this may not be thyroid related. Once I have reached the optimal doseage of natural thyroid, if the aching still persists, I will start down that route looking for answers. And there has to be an answer. If I don't believe that I may as well give up and I am not going to do that.
You have my sympathy. My 8 year relationship got trashed by me being ill and him resenting it, so I do know how you feel.
Yes, it's bloody isolating, and people look at you as though you're talking b*****ks. Or you're a hypochondriac. Or attention seeking. Drives me mad. My parents still think I'm largely making it up.
In a similar position to you, I can't take thyroxine (T4) because I can't convert it to tertroxin (T3), which is the active form of thyroid hormone. I said exactly the same thing to my GP and endo when I was on T4 - Excuse me, I feel like ***t, so how can the levels be right?
I even wrote a paper about it which the BMJ has online - amusingly enough for me, it's often cited by thyroid groups, like Thyroid Uk (I used to work alongside Barry Peatfield). In it, I say that if your tests are negative and your patient still says they're ill, then you aren't performing the right tests.
One of the problems with GPs and thyroid tests and thyroid problems is that med school gives them precisely ONE AFTERNOON to study it in its entirety. Ridiculous!
Good for you for sticking to your guns. You are a girl / woman after my own heart
I'm glad dessicated thyroid is working for you - it worked initially for me, then I stopped being able to convert the T4 component to T3, and now have to take T3. There is also some concern about consistency with Armour thyroid, or other dessicated (usually pig's liver) thyroid products, but as long as you're feeling good, I think you're the best person to judge whether there are any problems with it.
Who is the doctor / naturopath you see ? You can message me if you don't want to say on the forum - you right click on the person's name, and a Message option comes up - not very obvious, and it took me ages to find it on here!
Thanks for telling your story - there are so many variations on the theme of fibro that every bit of info helps. I'm like you, I figure that if I can find the cause, I can sort out a way to fix it
Funny that you mention Thyroid tests. A few years ago I was told that because my TSH was ok (for the UK but at treatable levels in the USA) I had no need for treatment. I insisted that I should have a T4/T3 test, so was sent to specialist who only performed T4 and said (when it came back ok) that I should quit now and accept that I had Fibro, and should live with it.
Mad, ain't it?
This is after I have been on an NHS funded expert patient programme which encourages you to go out and find solutions,,,,,,
But simple fact is you are not cured and you will become ill again.
We all know the trigger is stress and while you have positive mental attitude you do feel better.
Thyroid inst new its one of the first thing they check. And yes I am sure it has some affect to our condition but its not that simple.
I go through cycles of fatigue and pain. The lower the pain the more fatigued i feel and i manage to sleep. When the pain cycle hit's i feel wired cant sleep and suffer with all my symptom's. Its been this way for years and the only thing that changes the length of the cycle's is stress.
Way to win is accept your condition and stop trying to beat it. Exercise as much as you can and live a healthy life.
I lost my company , home and i walked out on my wife. I moved into a bedsit and rarely leave my bedroom. I did all this to avoid the stress that was making my condition worse. And it worked for a while but no matter what you do in life stress is a constant companion.
Happier now than i was for last 9 years of living with Fibro.
I'm very sorry to hear you've had such a horrendous time of it.
Of course stress is an ever-present part of life. And of course it's well known that stress makes fibro worse. It does seem, tho, that you have been forced to take some very drastic measures to alleviate the stress in your life, and by your own admission, this hasn't helped in anything except the short-term.
It comes down to how your body copes with stress. Has anyone ever checked your adrenals? If they are exhausted, then they will be unable to produce the stress-coping hormone, cortisol. All of the adrenal hormones (there are many of them, looking after blood pressure, stress, sex hormone production, cell receptor sensitivity, and others) are manufactured in the body from cholesterol and Vitamin B5 (pantothenic acid). It might be helpful to you to try taking one or 2 grams of B5 every morning (if you take it at night you will be kept awake by that spinning, won't-shut-up brain whirring all night) and seeing if that helps you cope with stress.
Also, according to the BMA's medical handbook, 99% of all vitamin C goes straight toi the adrenals, so if you haven't tried it already, taking a daily big dose of vit C can be very very helpful. To work out how much your body needs - which changes not only from person to person, but within each person, dependent on what stresses the body is dealing with at that time - you need to take a gram every hour throughout the day until you have an urgent bowel movement. The idea is that the adrenals are like a pair of empty buckets, and we're trying to find out how much vitamin C is needed to fill them up to the point that they overflow - hence the urgent bowel movement. It's known in natural medicine as the Bowel Intolerance Point, or BIP. Once you've established the amount you need to "fill up", which can be anything from 3 grams to 40 grams (it once took me 42 grams, but more usually for me is around 9 grams, and if I'm doing particularly well, it's only around 5 grams), you reduce if by a gram for the next day's dosing, to avoid the urgent bowel movement. I must stress at this point that it isn't the nasty bowel experience that we get from an infection or from eating something our systems don't like, it produces no burning or stinging, and whenever I've done it, or had other people doing it, we all of us have ended up in giggles on our respective loos! It does make you feel better.
Over time, you will find that your BIP will drop, and you won't need as much C as you did before. Your BIP will rise if you are fighting off an infection, or dealing with any extra stress..
Be aware that in order to determine your BIP, you need to take a form of Vit C that is NOT a timed release product - this defeats the point and will not give the result you need to get to. Also, the form you need to take to do this is Ascorbic Acid, which in sufficient quantity reduces the effect of stomach acid. It is therefore important to keep it away from a full stomach of food, because if you take a few grams straight after food, you will get an enormously bloated stomach, fart like someone doing impressions of gun-fire, and it will be very uncomfortable indeed. It will also, obviously, stop your body from assimilating the nutrients in the food you've just eaten. SO, keep high dose vit C intake a couple of hours away from a big meal. It does mean that the most effective way to find out you BIP is by having as day when you can have a big breakfast if you want to, but then no food until you've reached BIP. But then once you have reached BIP, you can arrange your doses around your usual eating pattern.
Hope this helps,
Best wishes,
XxX
PS I'd be interested in finding out how you get on with these two idea, if you decide to try them, so do let us all know
I am pleased to hear that you have found a way that suits you to cope with fibro.
The whole point of my post was that they did check my thyroid time and time again and told me it was fine. IT WASN'T I said in my post this was not the answer for everyone and it may not be the total answer for me.
I know just how debilitating fibro is and just what a strain it puts on relationships, BUT this is my life and i will fight to regain my health. For 10 years even with sleeping pills, I have not slept at night due to restless legs and pain. I now sleep through the night because I have been given Melatonin and Progesterone and because of the effect of the Natural Thyroid.
A year ago, I could barely move, so your theory of exercise as much as possible was out of the question. Now I walk for an hour a day.
My post was really about not taking no for an answer from the doctors, researching yourself and questioning.
I may become ill again as you say, but at least I will know that I have tried every avenue open to me. Whilst there is hope, I will never give up - life is about living.
Hear hear, Lizzie! Especially about the exercise thing. I CAN'T exercise. Whenever I try, even physio-supevised and aided exercises, my body reacts by shaking all over, getting muscle weakness and pain, and then I collapse in tears (which means I'm having some sort of hormone response on top of the natural feeling of being a useless piece of you know what that I can't even manage something as simple as a leg raise.) Exercise also invariably induces back spasm too. walking to the loo sends my back into spasm 8 times out of ten - the sort of take your breath away type of sudden muscle spasm. It makes me feel even worse when people harp on about the benefits of exercise - we all know exercise releases endorphins and makes you feel better, BUT the normal responses of the normal human body don't often apply to a fibro body.
I've even got machines that do the exercising of my body for me - a stand on vibration plate thing that works in a see-saw motion and therefore gets my legs working, and a leg massage chair which helps with circulation. These are great, but I only get to use them if I have the energy to get out of bed.
As for actual walking from car park to doctor's appointments - I have to use a trolley thing, because, depending on what my body is doing that day in terms of energy and stamina, my legs will just stop working with very little warning.
Exercise is obviously good if you can manage it, but my personal view is that you should not force it if your body is telling you it can't cope at all with doing it.
hi well done for keep going. I have had fybro since 90 I too searched every corner for answers not understanding why my body can just give up. I had just passed my teaching degree had a wonderful job all I ever wanted and bang.
whilst watching my family having fun on holiday I was watching from a caravan looking on the internet I discovered something that changed my life.
some American scientists had done dome research into the connection between fybro and epilepsy I read with so much hope. when I got home I saw a Dr . my gp was away so I spoke to a locom. He although sceptic allowed me to try Topirimate on the understanding I saw my gp I did a couple of weeks later. I photocopied my findings and he agreed to keep me on them to try. now two years later I have no pain. I do have fog that I can live with but no pain is wonderful. I do suffer with arthritis but that's a different pain entirely.
please all of you don't give up looking for the best to help you keep on trying its out there its just a case of finding it. gentle hugs x x
Wold you be willing to share you experience on my Fibromyalgia page? I think many people are misdiagnosed, and the way you have described your story has rung true for so many. With your permission, could I share your post, a photo... anything to get readers!
Yes I'd be more than happy for you to share my post. If you would like a photo, I'm more than happy to send one to you. pm me your email address if you would like one. Can you let me now the address of your fibro page as well please.
The problem I feel is that doctors are in the sickness industry and not the wellness industry. Once I learned how to take control of my health naturally my health turned around and am off all but one of my many prescribed medications. For the first time in many, many years I am well and full of energy. I just gave my body the tools it needed to regenerate and heal itself.
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I'm new
I have been getting a strangling sensation in my right calf and just under the back of my knee. 
Hi, I haven't posted in a fibro forum for a while as I have been "managing" it for a while but now feel pretty raw in more ways than one. 
Stressed!,
im a 30 year old women,i have sufferd with fibro since i was 7 yrs old,and have now been told i have spondylitis.
