Feeling bad

[ShelWhitt]

Feeling really down. Feel so ill. Nothing helps. Convinced I have brain tumour or something equally bad. Can't get past doc with fibro diagnosis. Does anyone know where I could pay to have a thorough investigation. I am so desperate. Does anyone else feel this bad or is it just me.

[Mandypandy1969]

I feel the same. Feel something isnt right. Seen a neurologist and e.n.t. due to audiologist sending me due to my hearing not be 100 per cent. Got told in the end, migraines and anxiety. No more investigations. As soon as fibromyalgia was mentioned as what my illnesses were, I think these people thought, all to do with that, send her on her way. I had a migraine last night and today, e.n.t. put me on medication topiramate. It has helped until last night. I have worn a mouthguard for years and told all to do with anxiety. Won't ramble in anymore as a long story plus I am falling asleep. Xx

[Hidden in reply to Mandypandy1969]

Hi

It's terrible the we are fobbed off and have to fight for everything. Please take care Lynne

[Mandypandy1969 in reply to Hidden]

I know. Makes you feel stupid. X

[Hidden in reply to Mandypandy1969]

Not much makes me angry but being fobbed off does !!! Love and hugs Lynne xxxx

[Mandypandy1969 in reply to Hidden]

I have a short fuse. I have severe tinnitus and can't bear noise which doesn't help either. Xx

[Hidden in reply to Mandypandy1969]

Hi

It must be terrible having tinnitus without everything else you have to cope with. You are an inspiration to us all as are the people on this forum. You are all brilliant at the way you all take things in your stride. Sending healing hugs to you all Lynne xxxx

[Poppy_the_cat in reply to Mandypandy1969]

Hi Mandypandy - love the name!

Oh dear, dear dear....this beastly business fibromyalgia. I hate it with an undying loathing too.

Things in general for me at the moment are immensely difficult, in several spheres...but I have had some successes.

I shall try to be brief and share.

For those of us here in the UK, currently our news feeds, or at least mine, due to my interest in the gut and the Microbiome...are providing us with the beginning of what I believe will be huge new data.

Watch this space.

Hippocrates pronounced over 2,000 years ago that "all disease starts in the gut". Nothing has changed, he was 100% bang on the money!

Free m my own experience... Fibromyalgia diagnosis in 1999, with food intolerances that I did not understand probably dating back to 20 years before... A great deal of issues had accumulated.

I am Hashimotos. I have now 17 food intolerances, fibromyalgia etc,...

Three years ago I finally was taken seriously enough to get sent for an MRI on my jaw, due to completely disabling. The pain in my head/jaw was so severe I would want to hit my head against a brick wall to give myself temporary relief.

You guessed it...

MRI results showed nothing.

The mandible consultant who was a conceited ass, treated me as if "it was all in my head"....no pun intended!!! His diagnosis was "wear and tear'", that old cope out. His only advise was that I shout avoid eating apples as it involved opening my jaw wide!!!!!!! He failed to listen to me when I told him that opening my jaw wide and pushing in on the big muscle in the cheek was the only thing that gave me momentary relief!!

I dismissed him out of hand immediately and knew that this advice/diagnosis was flawed.

Yes I too had to avail myself of the horrid silicone jaw splint or guard to wear at night. If I forgot, next morning I'd be in agony to start the day...

Well, I did something.

This is how I thought it out...

Following Hippocrates advice I went back to logical basics.

Assuming I have a less than desirable status of my gutbiome... Unable to eat properly, with a very restricted diet, unable to have blood tests done for several reasons (treasured GP:s emergency retirement, useless un-cooperative remaining other doctors in practice and my own veins going into some form of total rejection... I decided to supplement.

This is what I took, not all at the same time, together, but staggered...

1/

Vitamin D3 gel capsules (10,000 Iu's) per day for a few weeks, then reduced...and then rested + two tablets of its partner, Magnesium. The two need each other to be properly absorbed... 4 hours + AFTER taking thyroid meds. Very important.

However, I did this when we did not have all this sun, as too much Vitamin D is not good either. So best you get a blood test. For me I find having a test result between 80 - 100 suits me best. Don't settle for less!

2/

Daily Zinc dose....my hair even is so much thicker!

3/

Liquid Iron + Vitamin C; alternating days as I cannot take too much without suffering bad constipation... Again 4 hours + after Thyroid meds...

4/

Omega 3 Fish Oil.

4,000 in other words, X 4 of the large tablets daily...60 days at a time.

5/

Vitamin B12, now....4 tablets a day, two in the morning, two in the evening..

Results;

20 years of pain, a sensation of a severe burning patch on the right side of my head, just behind my right ear...GONE by 95%!!!!!

Gumshield... sitting idle in the bathroom for the last 2 months! No need for it whatsoever... Jaw pain of over 20 years, gone. Visits to the dentist... having suffered with a "trigger sensitive snap shut jaw" for over 30 years...gone, GONE! I can keep my jaw open without a wedge!

Acid reflux - was prescribed Omeprazole...only took it twice, then threw it away... dramatically reduced.

Dramatically.

Incessant night time coughing bouts, dramatically reduced. Strange asthmitic/bronchitis style cough, dramatically reduced...

Feet...

Was given plantar fascitis diagnosis by the podiatrist, even though he admitted my symptoms didn't quite fit the bill..... Advised to do physiotherapy...hhmmmm All a red herring.

After 4 almost 5 years of experiencing huge pain, especially first thing in the morning when getting out of bed...I can now walk almost pain free. Improvement of 80% I'd say!!

However, I have combined all of this with a regimen of probiotics (& follow up Prebiotic matter)...

Therefore my conclusion is;

Defective gut function due to an impaired gutbiome, resulting in IBS or whatever, food intolerances, gluten allergy, dairy, soya etc... connected to or provoking Fibromyalgia, in turn triggering other food allergy issues, themselves possibly provoking the Hashimotos immune response itself...can all be improved by attempting to self repair the quality of our nutritional intake, in an attempt to overcome our defective capacity to nutritionally benefit from what we eat - notwithstanding the issues we face with the poisoned food source of pesticides, fertilizer issues, and other polluted food sources we all have to contend with.

We can dramatically help ourselves with our nutrition. Supplementing when we need to.

I keep a diary to chart my progress and record my victories. We can do it, if we listen to our bodies and build upon the basics. Nutrition is the root of everything.

Sure if the window in your car is broken, you can still drive it.... If the windshield wipers don't work, you can still turn the engine over .. but it's hardly ideal.

We can patch ourselves up and keep staggering on, without addressing the problems rooted in our nutrition. We can deflect from the issue with patch-up solutions like gumshields ....or instead we can look deeper into the issue and figuring it out logically and objectively in order to find the solution.

You still have to use gas / petrol to drive your car. You still have to put oil in the engine...if you want it to run well; you have to take care of it and give it good grade oil! So why not do the same for ourselves!

I hope my experience will help to give you hope that you too can do something to help yourself. Apologies if this was too long.

Good luck.

Poppy the 🐈

[Bobbassett in reply to Poppy_the_cat]

Very interesting Poppy and very well done.

As this is uncharted territory for me, I’ll try to see a professional nutritionist for some advice tailored to my needs.

I have to be given B12 every 8 weeks, have Folic acid when I need it and have been given Zinc a few years ago. Yak! It was soluble and immediately after I felt like I was about to vomit 🤢

I totally agree that our diet can affect our health.

Taking my consultant’s advice, I minimise gluten and lactic acid and follow the FODMAP diet. This has greatly reduced my IBS and bloating.

Sometimes I am naughty and I break the rules; even though I know that I will pay the price for my mischief. However, just now and then , the little KFC, or cream cake devil gets the better of me!

Thank you for your inspiration to be more proactive in helping myself.

Take care

Jan xx

[HBpencil]

Wouldn't it be great if we could get all the specialists together for a head to toe investigation?! Over the years I have paid to see gynaecologists, gastroenterologists and am waiting to see a neurologist. All these ologists and I'm not really any the wiser. Well, l am wiser but feel no better. Just feel so ill ALL of the time...

Whenever anything is written about Fibromyalgia it's always about pain and not how rotten it makes you feel. So. It's not just you....😕

[Hidden in reply to HBpencil]

Hi

Sorry to but in but I had to get it down before I forgot what I was saying. I wish all these specialists would update the other specialists about you, what had happened and what their next plan of action would be then we wouldn't have to keep repeating ourselves when we saw them. I have to write it all down otherwise I'd forget!! Sending lots of healing hugs your way Lynne

[HBpencil in reply to Hidden]

Couldn't agree more Lynne.

X

[Hidden in reply to HBpencil]

Thank you xxxx

[Patdoyle in reply to HBpencil]

Completely agree with you. Unfortunately these consultants only deal with one thing and if you don’t fit the bill they pass you back to the GP then everything gets put down to fibromyalgia of in my case fibromyalgia/ME.

You feel so frustrated with the whole medical system.

Going back years you would have been taken into hospital and all tests done until a diagnosis was made and other things ruled out. It wouldn’t have taken years like it does now. My GP even agreed with me that this speciality system the consultants have is hard to navigate when a patient has lots of symptoms.

[skit]

hi there,

We all get bad days. Point to the good stuff your family, friends where you love going to just look at scenery . Imagine it as a little video playing. When you start thinking stuff like brain tumour then sadly that will not help with the Fibro it feeds off stress.

[Hazel_Angelstar Administrator FMA UK Staff]

I have to agree with mydexter in that sometimes we just need to accept that the doctors have done all the investigations they can, and when they come back clear we have the choice of accepting it or else constantly stressing because there are no further answers. Of course, if doctors have not done proper tests then you should push for them to be done xxx

[ShelWhitt]

You are right. I i do have severe stress. Just had the most horrendous year. DH been diagnosed with dementia last summer. Just coming to terms with that when he fell off a ladder just before Xmas. For four months it was appointments at hospital, docs, physio, tests , plus the extra work involved at home, not to mention Xmas. He is discharged now but is not very mobile, so he is limited to what he can do and together with his memory problems there is an extra load on me, when i could do with more empathy and support from him, to keep the household running, He is the only person who actually knows how bad I am, as the family don't know or want to know just how difficult things are, as they have there own problems, and to be fair they do help when they can. I have also been pushed into driving again, against my will, even if it is only locally, and that is causing me even more stress.

[Merlio18]

It's worth forgetting about a diagnosis from a private doctor and pay to see a holisitic naturopath or homeopath they look at the body as a whole and will look at herbs and supplements to enable your body to function better and address overall inflammation issues through diet and lifestyle and you need to address food sensitivities and heal your gut asyou more than likely have deficiencies and sensitivities without even realising as if you think thousands of years ago people didn't rely on a doctor and eastern medicine is very effective. It's diet and lifestyle that has caused all these chronic health issues in the modern world which can be reversed.

Maybe you could look into getting a carer or a support in the House for a few hours a week if you speak to your gp and tell them how hard it is for you maybe a support assistant can come and look after DH.

[trudym]

Look up FND - Functional Neurological Disorder - it may be what you have

[RayB]

I've felt like this for years,, it's frustrating,, frightening and more than anything leaves you feeling so isolated and vulnerable.

The headachs,, the gut,, the exaustion, the teeth,, the cramps,,the eyes, the feeling that your going to vomit,, the sweats,, or freezing,, the pins and needles,, the burning,, the aches and pains or things not working,,, the constantly feeling that your falling apart or at least knowing that things are going wrong and no one hears,, it's only Fibromyalgia,, a bit of pain!

While you lie awake and the world sleeps on !!

[ShelWhitt in reply to RayB]

You've absolutely nailed it. If only the docs could put it all together like that we might be nearer finding a cure. Take care.

[RayB in reply to ShelWhitt]

Thank you,, but I really don't think I did,, It seem a difficult thing for any fibromite to put put it into words,, I think it's because the symptoms are so diverse and as individuals we tend to say what we are experiancing at that paticular moment in time as and opposed to how we were last night or yesterday. Then you have the whole mental thing going on which don't make the condition it easy to explain,, then just a little bit of stress and the hormones kick in big time,, the heads in a whirl and you turn into a gibbering idiot with your thoughtx all over the place and talking gobbelty gook and feeling so frustrated,, and all the time wondering why,, I used to be able to hold my own where did my personality go,, where is my mind,, what is wrong with me,, why and I so stupid,,, and worst of all you keep thinking,, I'll do it better next time!

A constant beating your self up,, is it any wonder we are well known to self isolate!

[suewood59]

Just go to docs and say you'll pay to be refereed to a specialist or is there another doc say you want a second opinion. If you I know what you mean by they blame fibro and say youv got to live with it codein was the only thing that helped but iv just changed docs and they don't prescribed it so guess I'll have to change sending a hug x

[Anniecullen1]

No, I think we all feel like there has to be something more tangible wrong with us. Don't pay out for more tests as horrible as it is it will be Fibromyalgia and that's not to say nothing else will come along but if you need tests ask your own doc about them. Atm I'm feeling so low and in so much pain and even I struggle to believe that it's just the fibromyalgia, believe me we are all in the same boat.

Find a good box set and get comfy as you can and let yourself let your brain switch off from fibromyalgia for a while, hope your feeling a little better soon 🥰

[Lovetoboat]

I am sorry that you are feeling ill and I know how you feel...I have been battling this for about 20 years. I finally have a doctor that said you have fibromyalgia....That had never entered my mind.

There is a test online ...type in questionnaire made by a doctor in the U.D that he uses with his patients.

It is 10 questions....no one can have 10 out of 10 as everyone is different. Goggle it. Then print it off and take it to your doctor.

My husband is very unsupportive of me. But, I am going to live my life the best that I can. I am not going to sit there and take it. I am going to fight this all the way.

Keep going...don’t just sit...do whatever you need to to take care of you.

Kindest regards,

Michele

[YASMINTINA FMA UK Volunteer]

Hello there I am very sorry to read you are feeling so low, when we feel so ill you don’t seem to switch off, have you any nuffield hospital s near you, I have rang reception before to see if I could see a consultant without a referral the receptionists are very good and can help with any information you are asking about, does seem a shame people have to pay but you sound like you really need that help right now, if they say you do need a referral perhaps doctor will do one for you as after all you will be paying to see somebody. Xx

[KnackeredKaty]

You shouldn't have to pay for a diagnosis if you live in the UK. Often you have to be tough with doctors these days. They don't listen otherwise.

[Dinkie]

Really sorry to hear you are suffering so much. If your GP isn't doing anything perhaps a letter putting your thoughts in writing and then following it up with a telephone consultation a couple of days later is the way forward. I have started using this method and believe me once you put things in writing and it's on your record they do start to listen. This is a cheaper option! Just because you seek a private doctor doesn't mean you will necessarily get a better doctor or service, many are NHS doctors who also have private patients. I paid to see a private rheumatologist and the only appointment was last appointment on a friday afternoon. He didn't listen, couldn't wait to get me out of the door - he obviously had plans for the weekend - and he charged me several hundred pounds for the privilege. I appreciate there are good and not so good in all professions but I would certainly be more careful if I ever have enough money to seek private consultations again and would always go down the letter and then MP route before parting with any of my hard earned cash. Hope you get somewhere soon. Keep us posted.

[Al10]

On GP's behind closed doors, folks go in for the daftest seeming reasons and their GP's understand often, they just need reassurance. Not sure why having fibro precludes such understanding.

Probably, you don't have a brain tumour. Most folks don't but if you are worried it would be nice if the GP could check and explain why you don't have one. Lets face it, some unlucky folks do get brain tumours. I've no idea the difference in pain between brain tumour pain, and ordinary fibro making a fuss again pain.

I wish these horrid GP's would realise that the nice GP's that do the checking very often help the person relax enough through reassurance to enable them to feel better. Surely that is what healing is about?