Someone please help me ,give me some ... - Fibromyalgia Acti...

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Someone please help me ,give me some hope

Paula5 profile image
24 Replies

Hi I'm new here, I have been suffering in agonising pain for about 6rs, and now a new doctor tells me he thinks that I have this Fibromyalgia, half the time I have trouble just standing, please someone tell this gets better, I have 4 children Stevie 21 she has left home now, Kerry 15 and my boys Richie 5,and my baby Matty who's 3, and my poor husband has to do pretty much everything, please tell it goes away if proper had enough of this now

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Paula5 profile image
Paula5
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24 Replies
spider555 profile image
spider555

What is happening with your GP?

Paula5 profile image
Paula5 in reply to spider555

He is just testing me out on different meds at the moment,

Louby- profile image
Louby-

Feel your pain, much like myself,

Sending you hugs and positive vibes (((X)))

Liverbelly profile image
Liverbelly

Hi Paula5, it does get better, then worse, then better again. I have kids to so I know about the mom guilt you are probably feeling. When you feel good get your stuff done. When you're stuck in bed, amaze yourself with all you can accomplish from there, or just rest. On the days when my pain is so bad that I feel like I can take it is when I have to dig deep to stay strong. That's when I say fibro you will not win. I will. My stubbornness does not want to allow fibro to control me. It doesn't always work but it's what I do.

P.S walking helps a lot.

Judipat profile image
Judipat

Hi Paula

I am sorry your are in so much pain......just from your short post, I can sense the anxiety your are feeling too, which is entirely understandable given your circumstances.

How long have you been in this pain and where is the Pain? You say you have trouble standing......is that your back, your legs or Weakness?

You say your new doctor "thinks" you might have fibromyalgia. What makes him "think" that. Have you had any investigations, xrays, MRI etc. Have you seen a rheumatologist or a physio.

Has your doctor given you any pain relief? If not, I would ask for some and then you may feel a little more comfortable and able to think more clearly.

If you arm yourself with as much knowledge as possible about fibromyalgia and there is plenty on this wonderful forum........you will be well informed and able to push your doctor for a more definitive diagnosis.

I'm not saying you haven't got fibromyalgia, you may well have. However, fibromyalgia is a diagnosis made from a process of elimination and can take a long time to reach.

I wish you well

Judi

Paula5 profile image
Paula5 in reply to Judipat

I have been in pain for 6 yes and yes I have had lots of tests done, I have pain in my legs, feet arms and shoulders and that is just the start, everytime I try to do something like quick clean up or go up stairs most of the time I suffer for it, even having my boys sitting on my lap to long can set it off

Judipat profile image
Judipat in reply to Paula5

Hi Paula,

Sounds as if you are having a real miserable time of it.

Has your doctor suggested you go to a rheumatologist?...... they will be able to give you a definitive diagnosis and prescribe treatment. Are you on any medication?

I always think it must be so hard to have fibro or any other debilitating condition if you have young children. I wasn't diagnosed with fibro until my children were grown up and I can't imagine having young ones around and trying to deal with the pain, tiredness etc.

I hope you have a good network of friends and family to support you.

I wish you well

Judi

Paula5 profile image
Paula5 in reply to Judipat

I'm on 4 different meds but no he ain't sent me anywhere yet, just keeps testing me on different meds its very frustrating, but he is the only doctor has tried to help me over than just throwing pain killers at me

Al10 profile image
Al10 in reply to Paula5

Aw you can't miss out on cuddles. When my nephew was young he used to snuggle up next to me on my chair. We can look forward to better days and take some care not to make things worse by doing silly things. By silly I mean normal stuff that unfortunately sets off your pain.

Important to keep fit, eat healthy n if meds don't help come off em n try something else. Too many fibros are on multiple heavy duty drugs n still in pain. There is a theory that many Meds actually add to our pain n difficultys. Read up on fibromyalgia it is poorly understood by most drs so we at least need to be savvy. It is tough but doable. Don't despair n don't panic you will find you are stronger than you know.

Paula5 profile image
Paula5 in reply to Al10

Thank you, that is so sweet and moving

fluff24 profile image
fluff24 in reply to Paula5

Hi Paula. I am a mum too , of a 12 year old son , and like you, have suffered the pain of not being able to do much with him as he has been growing up. It is such a sadness that I couldn't play with him on the floor for any length of time when he was little, and even holding him on my hip [as us mums do] was painful. I really think that when you give birth , it takes such a strain on your body it can trigger something off in our systems, so when we are in prolonged pain afterwards it is just put down to pregnancy and the process of giving birth. Pre- motherhood I was in a dance group ,and enjoyed my nights out at the classes. But everything changed after having Ben. At a time when you need to have an active body , mine just seemed to be consumed with pain . I fully understand what you are talking about. My doctors did all the blood tests etc .. etc.. etc ..and fibromyalgia was the final result. Along with the wonderful arthritis that has joined forces too! I am sick of taking tablets throughout the day...and after all these years I don't think they work any more anyway. I am currently making a Halloween costume.."IT" from the new film , for Ben. I stupidly thought that sitting on the floor doing some of the stitching was ok? 2 days on I am still hobbling about like an old witch [ I'm only 51!!] So Paula , I hope the docs sort something out for you soon, because I hate the thought of you feeling so bad . You are not alone, so when you need to vent, or have a moan , there is plenty of us out here for you darlin.[ don't do too much today] take care luv Mandy [Fluff26 ] xx

Flyby7 profile image
Flyby7

WelcomEast I have it myself you can have flare ups then it can settle for a while but it will not go away have another word with your doctor about it all the best

uggycat profile image
uggycat

Hi paula see you are also in arthritis, sorry about your fibro diagnosis. your doctor can send you to ruematogist. He can at least look to see if you have any old injuries, ect that could be put right, that would help some. with all those lovely kids try not to take to many pain meds, they get less effective the more you take anyway. x

Bobby16 profile image
Bobby16

The NHS has a good booklet that explains clearly the symtoms and medication.

DanielleGemma profile image
DanielleGemma

Good Morning Paula,

Welcome to our Fibro family 🤗

I would advise that you take a look at our main site as this has so much information and help fmauk.org/

You will have good days and you will have bad, the problem with Fibro is that so much is still unknown about it! I would advise that you make sure you write down a list of all of your symptoms even if you don't feel like they are connected and make an appointment with your GP in a couple of weeks. Ask them what medication etc you can adjust in order to start to feel better and maybe request a pain clinic referral if you haven't already had one

Hope you feel well today 🤗🤗

Ronniec67 profile image
Ronniec67

Hi

Lots of reading and trying different things some pain meds can have rotten side effects so always worth I find to have someone close at hand especially with little ones being reliant on you.Lots of non prescribed stuff like heat pads various complimentary things that help ,I for instance love magnesium oil direct on some areas with oil or cream to help as it tends to dry hands and skin I wear clear gloves to put it on.Epsom salt baths or foot soaks are fab.We are all so different as is our condition and response to varied prescription drugs so differently.I love codliver oil capsules with omega3 Max strength bed time no hot drinks after ee yuk.Holland and Barrett due to do penny sale which helps with cost and lidil do some fab heat pads .I'm sure one of our fab team also suffers will help with good advice.Take care Xx

fluff24 profile image
fluff24

Hi luvvy, it's going to be tough I think . So sorry that you are feeling so bad. I too have been suffering for about 12 years with chronic pain. It's a hard slog, but it sounds like you have a wonderful family who can support you on bad days. There are so many people feeling this way too, so we understand how awful it is just getting up in the morning , just to endure another day in pain. Hopefully the doctors will offer you some treatments like acupuncture or heat therapy. they give some relief ,even if for only a short while. I can also recommend a TENS machine which can help various pains. Hope you find some of this useful.

Flibbertigibbet profile image
Flibbertigibbet

after years of being fobbed off with pain relief I was told i was going to see a bone specialist as a scan showed my rib had popped out of place due to what they thought was a lack of collogen. unfortunately I moved county & it has taken another 4 & a half years to be taken seriously. I have now been formaly diagnosed with fybromyalgia by a neurologist but am awaiting scan on my knee for austio athritis as it clicks and moves.

I too have a large family age 18, 16, 13, 2 & 8 months old. unfortunately after hacing my 2 year old I now also have pins and needles down my back sometimes buttocks. my glutes have stopped working & im convinced there is nerve damage but am being tild no by drs.

My fybro pain has been worse at points but I always try to keep going as i find i get more depressed if i stop. But its hard to keep going when you can hardly walk I know & upsetting when you cant pick the little ones up.

have you had any leaflets from Athritis research telling you more about fybro? I too am lucky to have a helpful gusband, but you cant see pain and I sometimes think my family forget or just dont get it because I look ok & have been doing things doesn't mean I am ok and aren't in pain or exhausted.

I hope you get some physio to atrengthen up & find a pain relief that helps.

cristina. x

Paula5 profile image
Paula5 in reply to Flibbertigibbet

I'm sorry to hear you have had such a hard time of it, do you feel guilty when the kids want something and you are having a bad day and can't do what they want because it causes to much pain, it is the worst feeling ever

Flibbertigibbet profile image
Flibbertigibbet in reply to Paula5

I feel guilty all the time. It hurts just to hold my baby & sometimes if I have had hold of my 2yr old on my hip my elbow locks in a bent position & its hard to put her down. The worst is when I have to tell her I cant pick her up today her little face breaks my heart.

All we can do is tell them how much we love them, what good kids they are, snuggle next to them & let them know how proud they make us. My baby likes it when I sing to him.

Paula5 profile image
Paula5 in reply to Flibbertigibbet

I'm glad that you have that connection, its so nice, your lucky my girls liked when I sang to them whey was young, but my boys only liked row row the boat,just got screamed at if I tried anything else

CSmithLadd profile image
CSmithLadd

Those medications are truly no good for you. Look them up and take a proactive stance in your healthcare. Doctors are not to be trusted as they are not trained in how the body functions. They are trained in how to write a particular prescription for a particular symptom! That's terrible, when you think about it. We think they know what they're doing and the vast majority of them simply do not. Symptoms are there for a reason! They never get down to just why you have the symptom you do. Instead, Big Pharma gives it a label (and you thought it was doctors who do that) and then makes pills for doctors to prescribe.

I would highly suggest you see a nutritionist. Without adequate Iodine, Selenium, Iron and Ferritin levels, Zinc, Copper, Vitamin D, Vitamin E, Magnesium and B12 (among others) -- the thyroid is not being fully supported for proper function and subsequent conversion of Thyroxine (T4) to Triiodothyronine (T3). It is T3 that is the active thyroid hormone that regulates metabolism, weight, body temperature, heart rate, cholesterol levels and blood pressure -- among other things as T3 in the cells keeps every system working properly.

Now you see how important nutrients are to facilitate thyroid function. When our nutrient levels are not optimal (pay no mind to "within reference range") then thyroid function slows and dysfunction occurs throughout the entire body. The first to rear its ugly head is usually fibro symptoms that are often dismissed as muscle aches. So why are conventional doctors taught to be so "anti-nutrient!" Some had told me I was wasting my money with nutrient replacement. It's how they are taught. Without nutrients... we make way for need of the vast majority of symptom-checking pharmaceuticals!

Conventional medicine treats each one of over 300 symptoms of hypothyroidism as an entity all its own. They give pills to alleviate symptoms and yet open the patient to a myriad of side effects that are unnecessary and dangerous.

Before you lead a life of increased pain and misery -- and a plethora of pills -- please check into the connection between fibromyalgia and hypothyroidism. It is the lack of T3 (Triiodothyronine) in your cells that is the problem. This occurs when there is a nutritional deficiency of one or more of the nutrients vital to thyroid hormone conversion. Most common deficiency: Iodine. Yes, even in the western world.

lifeextension.com/magazine/...

But where there is one deficiency there can be more. I'm sure your doctor showed no interest in your nutrients. Amazing, since the thyroid that regulates the entire body cannot function properly without nutrients -- and needed at much higher levels than what lame lab "reference ranges" state. Reference ranges are gleaned using data on all people -- sick and healthy -- who frequent the lab. I certainly don't want my levels to be diluted with sick people! I'd rather emulate a person who has never had a health issue!

But this is the machine that works hard to keep us unhealthy and then blames the patient for being sick. Conventional medicine doesn't question the ridiculous medical protocols that have proven to keep most of us sick -- and adds more and more sick people to the Big Pharma revenue stream every single day.

Bottom line: It is highly likely that you have nutritional deficiencies keeping your thyroid from getting all its jobs done that will keep you healthy without symptoms of hypothyroidism (like fibromyalgia). The medical industry didn't get flush with cash by telling the truth about things -- especially telling us the essential need for nutrients! Even the recommended daily allowances put out by the powers that be are not sufficient for optimal health. Not even close.

No doubt this is why human beings, despite great leaps in medical innovation, are getting sicker and sicker every day. More syndromes and illness than ever before -- even giving children (even babies) anti-thyroid drugs like proton pump inhibitors that shut off all acid in the stomach and all proton pumps in the body. Doing so creates more bodies in the revolving door where they dish out pharmaceuticals to cause another issue and keep us coming back for more.

Proton pump inhibitors (among a plethora of other pharmaceuticals) are killing people every day. And drugs like Proton Pump Inhibitors (PPIs) and NSAIDS are still on the market (like Celebrex which I was put on three decades ago as one of the treatments for Fibro). They are all detrimental to good heath.

There are many, many drugs that kill people at a distance as they cause a gross deficiency of nutrients in the body: such as diuretics and PPIs. Statins (cholesterol lowering drugs that are not needed when hypothyroid as correcting the hypothyroidism lowers levels to normal), and Beta-blockers are also anti-thyroid in nature as cholesterol is needed for producing hormones in the body and beta-blockers are used in the quest to reverse hyperthyroidism.

chriskresser.com/the-danger...

americannutritionassociatio...

acc.org/latest-in-cardiolog...

spine-health.com/treatment/...

The attack by pharmaceuticals on the thyroid cannot be a coincidence. Fluoride in products and is a known thyroid suppressor. It's terrible. But it's all around us. I didn't believe any of these things as I paid no attention as they surfaced -- I was proven wrong and it cost me dearly.

pharmadeathclock.com/

Wish I knew back then what I know now. Bottom line -- I'm healthy now. It is far more about replacing deficient nutrients and at levels optimized for full thyroid function. At the very least, this is how most thyroid dysfunction begins. It's not what you're told. But it has proven to be truth.

I used to be you. Knowledge is power. Power enough even to restore your health.

verywell.com/the-thyroid-fi...

Healing Hugs to You!

Margdoreen profile image
Margdoreen

Your blog is interesting reading . I am totally overwhelmed with all this that I read about our thyroid symptoms effecting our health. I have this condition and a few years ago my memory started to get bad . I went to my gp and asked to see a a specialist and asked if my thyroid numbers were correct of course they looked at me as if I was mad and I was sent away with we can’t find anything wrong with your treatment your drug doses are fine .

I still have a bad memory and because of it I can’t retain information. At times I have been so desperate thinking I ve got dementia up until 3 weeks ago I stayed away from drs until I was so bad with what I thought was my Arthritis flaring I couldn’t get downstairs wipe my own backside etc . I had a emergency appointment at the hospital. The Rhum said this isn’t Arthritis it looks like fibro . Blood tests prescription for Amitriptyline as I was crying in her office she said you look like your depressed have you had a shock recently !

So although I want to look into my meds for my thyroid and get to the bottom of if I should even be e on them my memory let’s me down and to keep up with the medical

Profession fobbing off tactics you ve got to be quick witted which I am not .

I have a drs appointment at the end of the month and it looks like I ll have to reel off all this to him . But it’s difficult because you only have so long one problem at a time so it will be just about how I’ve done on the amitriptyline .

I am thinking of having private blood tests done but even then how would you convince the medical profession .

Thankyou for all your advice .

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Margdoreen

you are responding to a post from two years ago that is an opinion and not a medical one. I would disagree with much of it.

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