I have to write something I’m losing the will... - Pain Concern

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I have to write something I’m losing the will to carry on.. it’s awful

So 4 yrs ago I went hyperthyroid and along with it I had hives for a year non stop. It took about 2 yrs for my thyroid to drop and since I’ve been trying to get back my activity levels. I’ve been getting wide spread pain across my body a burning pain along with fatigue. I’ve had a terrible flare of stomach spasms pain around my ribs and stomach, acid and back pain.. which I don’t normally suffer from.

All the worst possible diagnosis are going around in my head.

The fatigue today is just ridiculous I’ve felt vertigo burning pain, heaviness and I’ve cried.. I cried my heart out as I’m 37 and I can’t believe how my life has changed.

If I feel excited I can’t feel excitement normally as it’s over the top and drains me, when I feel sad it’s crippling me. Any kinds of emotions are hurting me and causing pain.. I do have bipolar and I’m not currently on medication but I just cannot cope anymore..

I’m seeing the mental health team tomorrow.. I don’t know what’s wrong

I see a chronic fatigue specialist 27th of June. Anyone else that can relate please let me know. I feel so sad.

34 Replies

Hi Zelda123

I too have lots of pain and have felt alone in it because i didn't know what was going on with my body but hang in there cause sometimes getting the right answers can take time. I know its hard most days. Believe me I know! I've had really bad days where I thought I could just end it all but just hang in there and keep asking questions until you get what you need. I also have back pain and burning pain and mine is caused from nerve damage. Do you have any tingling sensations or numbness?


Yeah I had tingling in my

Fingers and my left arm yesterday but that’s it.. I don’t usually get it.

I had tests for lupus and MS all negative but the blood tests shown inflammation in my body.

I’ve had tests for gluten intolerance and it came back negative twice.

My blood pressure is fine 112/64 my pulse 67 sitting down. When I stand it was slightly elevated but the nurse said it was normal, my oxygen sats were 100% so I don’t know what’s going on.

My thyroid apparently is in normal but they said it’s under active side of normal ..

Meanwhile my periods have become really heavy and unbearable.

I don’t know what’s going on.. I don’t have a life


Have you had any nerve conduction studies done? To check for any pinched nerves. Do you have anxiety? Because anxiety also has a lot of the symtoms you mention. I've had it and thought I was dying. Also can i ask why you aren't taking any meds for your bi polar? My niece has bi polar and refuses to take any meds and she suffers with a lot of anxiety and panic attacks

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I haven’t had any nerve conduction studies done .. I don’t know what they are..

I do have anxiety because I’ve tried to get my life back and because I’ve probably over done it I end up really fatigued with terrible pain and it scares me feeling like that.. I also get anxiety going out as before I’d go out and my energy levels just go while I’m out and about .. and I’ve ended up shaking having to go home. It scared me so much..

I’m not on meds as I had some awful side effects from my last lot there’s no psychiatrist at the moment as he was sacked so I’m waiting to get some others prescribed


Do you take anything for your anxiety? Are you able to see a social worker of some sort to talk about your anxiety because when you have health problems anxiety just makes it 10 times worse. Always jumping to conclusions and thinking youre dying. I always thought i was having a heart attack. My legs and arms would tingle and ache,my heart would race, chest pain etc. Also i have gallstones and i get stomach and ribcage pain and excruciating backpain during a flare up also the acid reflux is chronic. Maybe you could ask your doctor about gallstones.


My mum had a gallstone the size of a golf ball and had to have it removed.

What causes gallstones ? I’m not used to having stomach problems at all.. I feel like everything’s packing in..

I’ve booked the doctor for Wednesday morning as I’m sick of all the pain..


I have cholesterol stones..too much cholesterol in my bile which caused the stones. It's also hereditary so my mum, sisters and aunties have it too. The pain is debilitating. My daughter has a lot of stomach problems and shes only 27 but hers are due to low iron. I'm glad you're seeing your doctor. Just be pushy and ask for more test or even an ultrasound on your stomach. Good luck and let me know how you go 🙏

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I’ve got a ultrasound referral just waiting for the appointment


You say: "I don’t know what’s wrong". You cannot know what is wrong. It is a problem related to tension in the fascia.

You say: " I’ve been getting wide spread pain across my body a burning pain along with fatigue". I recognise that in myself as a result of certain life events that have taken place over the last few weeks.

Talking about it will make it worse. There is the possibility of making it many times worse.

I believe movement is the best way possibly of dealing with it. It frees up the fascia.

Fascia forms a continuous tensional network throughout the human body, covering and connecting every single organ, every muscle, and even every nerve or tiny muscle fibre. The first International Fascia Research Congress was held at Harvard Medical School in October 2007. Fascia issues is still not yet in a doctors medical training.

The fascia has thousands of nerve endings which feed into the brain. It has contractile components which can contract and relax.

A helpful book on fascia is “Fascia what it is and why it matters” by David Lesondak ISBN 978-1-909141-55-1.

I am working on a post to give on fascia before moving on to fascia freeing exercises. This will take me a little while.

A stop gap is the following Youtube video. It is not exactly what I do but it gives something that can be helpful in the meantime.

Another video to get the feel of movement that could free the fascia is on Youtube. It is in Chinese. Watch the movements of the participants. Particularly the children. They are constantly moving. They move in and out of emotions. The emotions are caused by fascial state and the they change fascial state by their movements. Adults get trapped in unpleasant emotions because they do not move the fascia. Try the movements seen in the video in the privacy of your room.

Hope I have been able to be helpful. I will be very interested if my movement suggestions have been useful.


I never ever suffered with pain until after my thyroid problem and my hives can the fascia be affected after illness

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The answer is yes. How and why is probably different for everyone. The answer is not simple because of feedback mechanisms between brain and fascia. These feedback mechanisms are complex. Illness affects our movement. A long term health disability modifies how we move and when we move. This has impact on the fascia.

Nothing is simple. Many things cannot explained in words. We have to develop the experience to investigate. And the tools to investigate so that we can develop better strategies to improve our quality of life.

My Post: "Meditation and Mindfulness for person with long term health disability" lays the foundation concerning mindfulness which can be used to investigate ourselves. It may be difficult to follow because I tried to talk about problematic issues of mindfulness and meditation.



I also suffer from bipolar and exaggerated emotions I also find when I get happy or excited it’s exaggerated and I get wide spread pain .. can someone with mental health problems be able to practice mindfulness ?


Yes is the answer to your question. I have lots of mental health problems and I practice mindfulness. You need the meditation to go with it. Find a local Buddhist group who practice meditation and mindfulness. The group will give you stability.

There are christian churches who practice contemplation. This would be helpful.

We cannot learn meditation and mindfulness from a book. We need to learn from other practitioners by a process of just being with them. Long practising practitioners will know some of the problems and help guide you.

There is evidence in your post that you are already practising mindfulness. You say: "I also find when I get happy or excited it’s exaggerated and I get wide spread pain". This is being mindful of what is taking place in the present moment.

There are levels and depth to mindfulness as you develop the practice skills. There is the develop of taking mindfulness and using your observations to improve quality of life.

is worth looking at

is the follow up

Hope I have been able to answer your question. Take it slowly. There is no hurry. Remember he who hurries, gets nowhere fast.

It took me a long time to learn the skill of letting go and surrendering to the present moment.


Thanks il go through each of the links 😊


A story

I had a road traffic accident in 1991, I experienced a screaming fit in the middle of the road circa 1994 over something very trivial. I watched the whole incident unfold from start to finish mindfully. Could not do anything about it. I had several other incidents like this all mindfully observed. Somehow I discovered I could predict the stresses that would cause the screaming fit and take steps to prevent the possibility of a screaming fit.

The road traffic accident resulted in unpredictable brain functional damage. This changed a lot of my responses to things. Initially, damage side effects caught me unawares. Mindfully observing I could see what led to the problem and then make changes to circumstances.

Hope this is helpful.


Well I don’t know why I suffer with fatigue or pain.

I know that 4 yrs ago I was working, cycling and doing well for someone with bipolar.

Then when I went hyperthyroid I developed hives I ended up not being able to move. I was still working with hyperthyroidism. But one day I just couldn’t move. I tried getting on my bike excersize and one day on my bike I ended up shaking, my muscles just went limp and it had never happened before.

I had muscle weakness and pain. So I had to start from the beginning to get my activity level better. 3 yrs on I’m still having to start again to get my activity level back.

I don’t know why.

I have bipolar, childhood adhd, anxiety and they also believe Asperger.

I worked with all them conditions all my life. With ups and downs.

Now why after that illness can I not get my act together. Where the hell has this fatigue and pain from from.

I know now that my mental health has deteriorated because I can’t cope with having any emotional response at all.. it actually causes pain.

I feel like I don’t want to be here anymore. It’s serious because last week I wanted to hang myself and then later that day I asked to be taken to the casino and couldn’t play on a machine properly because I got too excited and was shaking.

So something is very wrong something in my brain.

Logically I have become unfit and when I do try and have a normal day it’s expected to feel pain. I get that. But pain and fatigue that lasts a week where sometimes I talk like I’ve have a stroke and can’t make a meal is ridiculous.

Because I don’t know and feel all these things wrong I have anxiety which everyone knows makes everything ten times worse.

It causes fatigue, pain feelings of complete dread. I try overcoming it by walking to the shop and going in the shop on my own to battle vertigo and feelings of fatigue.

It’s like my body just wants to get into bed and rest .. and I know that will lead to deterioration.

So not knowing why.. logically my mental health deterioration can add to it all..

I totally sympathise with your story. Having got brain damage must be difficult but you know why or the source of your issue and can at least have a treatment plan. I don’t. I’ve got no idea or way to get better. I cry sometimes walking around because the pain and heaviness through my body can be that bad.. I feel like I’m going to just die outside on the spot.

I write journals, I write poems, I listen to the Devi prayer to try and calm myself down. I take my dog out every morning to be in nature and be out in the open.

I will be painting again soon on canvas. Again with an open mind. But I am so bloody tired.

So sick of fatigue. My life torn apart and my personality fragmented. I’m lost.

And please don’t think that I would ever take away by what I’m saying the severity of what you’ve been through because what you’ve had to deal with is terrible.. and to have the knowledge and way of thinking you have is commendable, you truly are remarkable. ❤️ my brain chemicals have ran dry and some days I just stare . Thanks for your comments


Thanks for the reply. I don't feel remarkable. I am just a traveller. I am lucky to have met some remarkable people. I am lucky to have received instruction from some remarkable people. We are all mapping our own journeys.

You say: "It’s like my body just wants to get into bed and rest .. and I know that will lead to deterioration."

Why not trust your body and go for the rest. Sleep and then go and then do something. Recent research has shown that the brain only gets rid of waste products when it is asleep.

Do something with quality even for a short while is better than struggling for a long while. Today is today and now is now.

You say: "I feel like I don’t want to be here anymore. It’s serious because last week I wanted to hang myself and then later that day I asked to be taken to the casino and couldn’t play on a machine properly because I got too excited and was shaking.

So something is very wrong something in my brain.


How about there is nothing wrong with your brain. How about you just need to learn new skills. If you apply wrong methods of doing things you will get wrong results.

The story I told was about something had changed. I had to change the way I did something.

Change is difficult. Daring to trust yourself is difficult. Being mindful of yourself when things are not right is unpleasant. You are giving evidence that you are being mindful. You are being mindful of what happens when you do the wrong thing. The moment of noticing what the wrong thing is was when you perhaps were not mindful.

Sometimes it may be best to let go of trying to find out what is wrong. The diagnoses you have do not give causes. Maybe this is because the physical cause present was not able to be found by the doctor. So you were given a diagnoses for mental symptoms.

You say: "I have bipolar, childhood adhd, anxiety and they also believe Asperger."

Bipolar - breathing issue that modifies the blood so brain gets high. Brain responds to high and over works itself resulting in exhaustion.

childhood adhd - Not enough sleep. Causes problematic responses which creates social unease in others

anxiety - breathing issue and leg chest back muscle issue picking up social unease others have.

Asperger - your thinking is different than many others. This provokes emotional unease from ourselves. However you can see and do things others cannot.

So evidence above saying nothing wrong with brain just brain responding as it should to physical things you are doing.

Staring is not brain chemicals run dry. It is exhaustion.

My physical problem suggestions may be right or they may be wrong. You can only investigate.

Grant me the serenity

To accept the things I cannot change;

Courage to change the things I can;

And Wisdom to know the difference.

Grant me the peace to live one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to wisdom


Thanks for the reply I really appreciate it . I thought that mental health problems were down to a imbalance of chemicals rather than not breathing right or lack of sleep. As a child I slept quite well, despite being brought up in a hotel. It’s going to take a long while before I understand what changes I need to make and how to adapt.. because I’m still punishing myself that I m not working as working helped my mental health conditions an awful lot and I enjoyed my job.


You say your thyroid results show you are underactive, are you on Levothyroxine or any other replacement ? Your pain Is more than likely thyroid related so I suggest you post your latest results on ThyroidUK forum for advice. If you are untreated or undermedicated it can be fixed !


It’s going underactive it’s on the lower end of normal .. surely I shouldn’t be getting symptoms if it’s in normal range ?

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We wôuld need to see your actual results, TSH, T4 and T3 at least and if you have had antibodies tested then even better.

You can't be "going underactive" you either are or aren't and yes you most definitely can have symptoms if your levels are wrong. Drs are notoriously bad at treating thyroid problems and wrongly only look at the TSH result, they will say you are "in normal range" as long as the numbers fall within that range, it doesn't mean your levels are right and where they should be.

Go over to ThyroidUK forum and read some of the posts, you will see what a problem this is for 1000s of people.


The dr said my TSH level was high but they said other things can cause your TSH level to change from time to time and that your TSH level can fluctuate. I have autoimmune thyroiditis and graves


High TSH indicates a problem so they need to look at T4 and T3 level as well, ideal TSH is around 1 or below. You need a copy of your results.


Yeah I’ve had a issue getting a copy from reception they don’t like to give you results do they


They cannot refuse, it is your legal right to have copies, don't let them tell you otherwise.


Hi Zelda123, Lower end of normal is very bad, as you are experiencing. It's no wonder you are not feeling so well and you have many hypo symptoms.Yes, you absolutely will get symptoms if your levels are too low or too high of "normal" range. If you have hypo symptoms, then your Free T3 and Free T4 (these are your thyroid hormones. TSH is not a thyroid hormone. It come from your pituitary and measuring it indicates fast or slow your pituitary is telling your thyroid to work.).

One very important question: You mention autoimmune diseases lupus and MS, but I don't see that you've mentioned Hashimoto's, which is autoimmune thyroid disease. Your symptoms and your levels being so low first scream under medicated, then they scream autoimmune to me. Have you had the TWO (not one) thyroid antibodies tested, TPO/ab and TG/ab? Both have to be tested to rule out Hashimoto's.

Here's a simplified goofy analogy of thyroid hormones when they are low in range versus high in range. Pituitary is the boss who gives instructions to the manager (your thyroid), and thyroid hormones FT3 and FT4 are the employees who do all of the work to make your metabolism too slow, too fast, or just right. If those employees didn't replenish their energy that day, didn't have their cuppa that morning, they will drag their feet and your FT3 and/or FT4 will register low in range. This is when you will have hypo symptoms. If the employees are over caffeinated, ate too many energy bars, they start working too fast and your FT3 and/or FT4 will register too high in range or over range. This is when you will have other symptoms causing you to feel bad, or you might feel hyper instead of hypo. Now if those employees have the right nutrition and just the right amount of caffeine so that have what they need to work efficiently and they pace them selves, then your FT3 and FT4 register right in the middle or at least over 50%, if not higher. Everyone's sweet spot is a little different.

Personally, if either of my thyroid hormones were as low as yours are, I would not be able to function at all. If mine drop below 60% of range, I start to have symptoms. My sweet spot is maintaining both my FT3 and FT4 at 62-65%, and then I have no symptoms at all. If my levels get up to 75%, that is way too high for me and I will have symptoms. Generally speaking, most people feel pretty good around 50% of range, but they feel even better when their hormones are a bit higher, but not too high. When I was diagnosed with Hashimoto's, my levels were something like 40% and 35%, and I felt absolutely horrible! Anxiety is a symptom of an under treated thyroid, and I had it, plus other symptoms. I was not immediately given thyroid medication so my hormones dropped even further. I had chronic pain everywhere. I had nerve problems. I was very very cold and it was a hot summer. My muscles and joints locked up and it was very painful to move. Aside from not having thyroid meds causing low thyroid hormones, not being treated caused my already very, very high TPO/ab to increase by multiple thousands of points. Most of my symptoms were autoimmune related.

It is no wonder that you feel so ill with your hormones being so low. Can you please post your current thyroid bloods, TSH, FT3, and FT4, and if you've had antibodies tested, can you post those results too? (If you've had Total tests, or TT4, this is the completely wrong test. Only the "free" tests are the correct ones.

You will be surprised how amazing you will eventually feel once your FT3 and FT4 are where they are best for you. Don't be surprised if many of your pains go away. If you do have Hashi's, there are some things you will need to do to keep inflammation down. You mentioned having positive inflammatory markers somewhere on here. Which ones and what are your numbers? What are you doing to reduce inflammation? Inflammation can be caused by eating certain foods. What foods do you eat?

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Yeah I have autoimmune thyroiditis and graves I had both antibodies tested as I went thyroidtoxic 4 yrs ago. They thought it was graves at first because they found the antibodies but after another consultation they realised my thyroid had dumped the thyroxine in my blood. I was negative for lupus and MS but I had a positive for parietal antibodies that the dr said was a false positive due to my autoimmune thyroiditis


Having both Graves and Hashi’s makes it all the more complicated. If you edited your original post include details about having Hashimoto’s and Graves, what thyroid meds and other meds you take, your all thyroid levels, a list of all of your symptoms, details about going thyrotoxic 4 years ago, what your diet is, your current ferritin or preferably iron panel, B12, vitamin D and any other details about your situation, then all of your concerns would be up at the top where more people see your full details, then more people could help you. Without complete details it’s impossible to tell what exactly is going on. Having thyroid hormones at bottom range is the first problem, you need response from people who have both Hashimoto’s and Graves. You can edit your post and I think the title too.


Zelda if you’re positive for parietal antibodies it could indicate B12 deficiency. In the UK the acceptable level of B12 from blood test is much much too low. Any level below 425 is too low. You might need B12 injections. It’s difficult to get GPs to accept this. I had to fight for one year to be prescribed B12 injections. It did help with balance. Worth investigating. Check with PAS, the pernicious anaemia society, based in Wales. They are brilliant.

Don’t give up.


Il find my letter that has my inflammation numbers on it apparently it’s high, it’s a letter from a hospital that refused to see me for fatigue and pain


I suggest you post this on ThyroidUK so more thyroid members see it and can help.


Inflammation means your immune system is reacting to something. Pain can cause an inflammatory reaction. High antibodies/low thyroid hormones can cause muscle, joint and nerve pain and inflammation. Do you have any infections? Stomach or gut issues? Have you been tested for diabetes? Diabetes or insulin resistance and hypothyroidism can go hand in hand. Diabetes causes inflammation. Have you done a fasting insulin test? If it’s high, this means inflammation.

There are multiple non-specific inflammatory markers. There are more common ones like ESR/SED rate, high white blood cells and CRP, and a newer test called PCT. Then there are others that most doctors don’t run, like TNF-alpha or hsCRP. These are all just general inflammatory markers that are not specific to any one disease or any one type of disease. These inflammatory markers can also be high due to inflammation caused by poor choices in lifestyle habits or by some external cause, such as mold in the home, exposure to allergens, exposure to chemicals.

Diet (I don’t mean dieting, I mean a healthy balanced anti inflammatory diet), exercise, sleep, adequate levels of key vitamins, and treating any underlying bacterial, fungal or parasites infection are all ways to reduce inflammation. If there is a known disease that is causing the inflammation, treating the disease correctly will help lower inflammation.


Oh my goodness fascia is everything. I get 90 minutes of MFR massage/body work done every other week and it has been life changing. Just getting the fascia to let go starts the healing process. Nice to see someone mention it. 😊


Hello Zelda, First, stop thinking that your pain and other symptoms are a failure due to your actions. Pain is your body screaming that something isn't right. Sometimes we have diseases that our doctors haven't discovered yet. Autoimmune Disorders fall into that category. So, a few decades from now, someone who has your symptoms will finally be treated correctly. When they fix something like a thyroid disorder, it doesn't happen like a mechanic screwing on a broken piece of machinery. Our bodies react to treatment by overshooting and then bouncing back. I call it hormonal football. And, it can make all of your symptoms go off the charts. It can take months to years for your body to stabilize. You are in such a difficult position right now. No one listening well and no way for you to fix yourself. Doubt and fatigue have taken over. First, look around you and identify the person who is your best supporter. Someone who you can trust. Second, identify the one thing that seems to be a comfort to you...music, tea, CBD oil, acetaminophen, whatever it is. Put those two things together and come up with your own method to pause and breathe. So, my regimen....a heated blanket, iced tea and acetaminophen. It makes no sense to anyone else, but it doesn't have to. My person is my husband. So, do your regiment when you can each day and talk to your person every day.

None of this will fix the inherent problem, but it will keep you centered and help you stay in control, until the specialists figure out what to do next. Remember, you are a human being with a medical illness. You will get better. Your time for wellness is just ahead.


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