Been up since 3.00. Searing pain throughout my body. Been having a really rough time lately but tonight was/is above and beyond. Even my friend the hot water bottle is not helping. Feel so low just at the moment. Spent the last month going down the 'is it my thyroid' route and spent a lot of time and energy researching and getting blood tested.Got a few answers with that, but have so many other things going on think my body is saying enough is enough. I feel like it is packing up on me. I am so exhausted, but can't sleep. I feel I just want it all to end. Does anyone else feel like this. I appreciate the support I have had on here but feel so alone. I really wish I had someone with me who understood instead of being made to feel I am a hypochondriac, by my family or worse, dismissed as though I have nothing wrong, because I look OK. Thanks for listening.
Pain and more pain: Been up since 3.0... - Fibromyalgia Acti...
Pain and more pain
So sorry your suffering, I guess it won't help much. But many many of us suffer with Fibro in the same way. I just take one day at a time and look for other ways to distract my mind. After 35 years of fibro I can say for me personally thinking about things constantly only makes everything feel so much worse. And I cling to the thought I'm not terminally ill which is a blessing. I hope you find something to help you cope xx
Mo
Thank you Mo. It was one of those nights when I really needed a listening ear, and receiving a response has helped a lot! I understand everything you say, and have probably chatted to you before, as I have been having a really bad time recently and have posted quite a lot.. I too have had fibro over 35 years, but not officially diagnosed until 10 years ago, and it has got progressively worse, as circumstances changed , the latest becoming carer to DH who has dementia and is barely mobile; and all the stress this entails e.g. attending all the appts, visits, tests and clinics for us both, plus paperwork and attempting to get any financial help, is exhausting. Plus I have been going down the thyroid route to see if that could be causing any of my problems. Vain hope I know, but I feel I owe it to myself to at least try! I know I have been doing too much, which has probably made things worse, but what alternative is there, when you have no one else on board! I do try to pace myself, when possible, but I also agree with what you say, it is not good to be spending so much time obsessing about how ill I feel. I do try to get out occasionally amongst other people, and you are right, I should count my blessings more! The sun is shining and it is another day!Take care xx
Aww bless 🤗🤗 I do really understand. I'm going through a very rough time myself at the moment and it is hard. Very hard when you have no other people to reach out to for help.
Yes the sun is shining hooray. Let's hope it last for a few days. Hope fully it will lift everyone's spirits because we deserve it. You take care and try and stay positive. I know it's hard but what is the alternative. And been down is not going to change things not for me I know that for sure .
We just got to keep biting the bullet. Take care lots of love and hope your day will be a better day for you 🤗🤗😘
It's lovely to see you Dizzytwo hope you're not in too much pain miss you on here after the kind welcome you gave me that helped me to start joining in 🤗
🤗🤗😘
Thanks for responding Zoonie. That in itself has given s me a lift when feeling so down. I might feel a bit better if I could take medication, but I can't, other than occasional paracetamol, so it is hot water bottle or nothing! The sickness doesn't help either. On the bright side it is now 8.15, time to officially get up, it has finally stopped raining and the sun is shining, at the moment. As you so eloquently put it, hey ho it's another day! And we are still alive (don't know about the kicking though). Take carexx
Have you tried looking at your body as a 'system'.... It could be that you're short of some minerals (e.g. magnesium), vitamins (C3, K2), amino acids (L-Tyrosine, L-Theanine) etc. - all of which could help you sleep better, and which bad sleep steals from your body.
Stress hormone Cortisol, which is supposed only to wake us up in the morning and alert us to a threat occasionally, is one mallet that gets thrown into the works... Unlike epinephrine/norepinephrine (adrenaline and noradrenaline in 'old money'), Cortisol doesn't leave the body when it's no longer needed. Instead, it demands energy from the Amino Acids that should be going into the balance of our sex/mood and thryoid hormones, including insulin..... which can lead to diabetes....
Then, there are our poor gut flora, trying so hard to help give us the nutrition we need from our food, despite the rubbish we eat and the pollution we breathe in...
There may be lots of ways you can improve how you feel (as I have set out to do) by getting back into your body (no matter how much you want to leave its pain and fatigue)... really listen to what it's telling you, from farts and burps (sorry.... that'll be food you can't digest easily, or too much sugar and lo-qual carbs in your diet, or a leaky gut from those ant-biotics and painkillers you were made to try YEARS ago!) to sore muscles (lactic acid build up...) and inflamed joints.... exhaustion after eating wheat (Gluten-intolerance), exceptionally dry skin, rushing to the loo, blurry vision (symptoms and effects of FM), swollen glands (side-effect of CFS), etc., etc.,
Write down ALL your symptoms... then research natural, gentle ways of making yourself better.
If it means giving up chips, or milk, or bread.... you need to, at least, try and give up the means by which we cause ourself pain.
If nothing else, eat a good protein breakfast within an hour of waking up (turn off Cortisol) avoid the morning news (keep away the Cortisol) and meditate or watch the birds.... keep your stress levels low.
Then, make sure you have 50mg of Vit B6 and 500mg of Vit C per day to allow any good proteins in your system to make some Dopamine and turn it into happy-hormone Seratonin...... in time to sleep!
Have a GOOD day - and be GOOD to yourself!
Hugs, dee x
P.S. Please excuse any typos - I'm too sleepy to go back and check.... and one of my cats has curled up in the crook (?) of my back..... sleep well
I do feel for you it's horrible to feel the way you are I seem to be permanently in that frame of mind have to push myself to do anything and don't have any enjoyment no matter what I try, I'm sure it will pass and I hope it does for you, maybe the extra daylight hours will make us all feel a bit more cheerful? xx
Thank you Malmal and I hope you are feeling a bit better soon , too. Take care. xx
Sorry you are feeling so awful at the moment Shelwhitt. It's hard to know for sure how some one feels but what I do know is that you are not alone in the pain you feel from Fibromyalgia or the endless sleepless nights pacing about, or family and friends not quite understanding whats going on. That's something we all share I think. I hope you will be feeling better soon and everything will become lighter for you. xx
Thank you bobbybobb. Hope you are feeling reasonably well. All the kind messages from my 'fibro friends' mean the world to me, as I know they are the only ones who truly understand. I certainly feel brighter now than I did at 3 a.m this morning, so great big hugs to you all!!and best wishes that you all have a better day tomorrow than you had today! xx
Thank you so much. It's lovely to have a response and know someone understands. You take care too.xx
I feel your pain, ShelWhitt.
Yesterday was harder than usual for me, too. Not only was there a spike in pain through my spine and into my hip bones, right leg and right shoulder, but I was also forced to face up to some hard truths regarding my life span delivered during a consultation with my oncologist. I was then accosted - in the waiting room while I was waiting (alone) for patient transport - by my secondary cancer specialist nurse who decided to inform me that my children would "come out stronger after experiencing loss". I promptly burst into tears. In public. I try to stay upbeat, but it isn't always possible, and yesterday was particularly painful. At a variety of levels.
I'm constantly told that I "look so well". It's all I can do to stop myself screaming into their face/s. The energy and wherewithal that I have to summon up just to get out of bed and get dressed is unreal.
Exhaustion is difficult to deal with, as is unrelenting pain. Sometimes, when we're confronted with impossibilities that litter our path, dealing successfully with just one of those problems or issues is cause for celebration. I hope you identify and successfully address that one problem or issue that will encourage the tide to turn for you.
My heart hurts for you, XXX you are amazing, and if I could take your pain and suffering away I would in a heartbeat!
You are a darling to say so. I so appreciate your concern. I am sorry I haven't been able to respond till now: I have had a bad few days... Hoping you are as well as you can be XX
I know what I would have said to the nurse, how very stupid. I hope your pain will settle enough for you to relax. xx
You are so very kind. I am sorry this response is so delayed: I have not had the best of times just recently. I hope you are as well as you can be XX
Hi
You are always in my thoughts and prayers. That nurse needs to learn what and what not to say to patients. You must have felt like screaming at her. I would have burst into tears too. You are an inspiration to everyone. Thinking of you as always Lynne xxxx
Lynne, you are an absolute darling - always looking out for all of us on here. You are so loved and appreciated: I hope you know that. I am sorry this response is so tardy: I have had a less than encouraging few days - but I'm here again and raring to go! Hoping you are as well as you can be XXXX
Hi
Your post isn't tardy at all. You are one coraagious, beautiful lady who deserves all the support that we are sending you and a lot more besides. Lots and lots of love and hugs Lynne xxxx
xXx
So sorry The Driven Snow.Just come back on line. Wrote you a long reply this afternoon and it must have gone missing. I am so upset about it, will try to replicate it . ASAP.
Something wrong with site. My reply for Driven Snow not appeared and I have got responses to my post, which say are for The Driven Snow.
Hi Driven Snow. As i said I have already replied but somehow it has got lost. There is a mix up on line, I am getting some of your responses. Any way to recap. I am so so sorry you have received even further bad news. I really don't know how you are managing to cope, other than you don't have a choice. My heart goes out to you and I only wish I could offer some comfort other than words on line .As to the nurse, I am absolutely appalled. No nurse in her position should be acting this way. She definitely should have known better. In fact I would go further and say she deserves to be sacked. There is no wonder you broke down in tears. anyone would have done. I am sure you could take the matter further, if you wanted, but what would it achieve. Maybe satisfaction, but do you need the stress? You must do whatever is best for you, and no one else. The only words I can really offer, is to say , cherish your loving family who are supporting you; do your best to get whatever makes you happy, however small, out of each day; spend time with your lovely dogs who never ask anything in return, and we are here for you whenever you feel the need for a chat. As for platitudes from others, ignore them the best you can, but if you feel you need to scream, scream - even if it is later into a pillow. The only thing I can really identify with is your physical pain, and to a degree, stress, but to have that on top of all the mental anguish must be unbearable. I must admit hearing others' stories on here has made me take stock, and no matter how bad |I feel I realise there are other feeling far worse!You say you generally feel upbeat and that is good, but don't feel guilty when you don't. It really doesn't matter in the great scheme of things. I wish I could offer more. Lots of hugs. xx
ShelWhitt, what a lovely lady you are - so thoughtful and concerned. I appreciate your guidance: you are so right... I aim to squeeze every last drop of joy from every last minute - to hell with the naysayers!! Not long ago, I came across a poem that reflects this delight in the little things. I will look for it tomorrow and post it on our forum so that we can all enjoy it. I hope you are keeping as well as you possibly can be. XXX
Hi there. Lovely to hear from you again. Missed you! Hope you are feeling a little more upbeat, after your awful ordeal last week. I too, have missed chatting to everyone, as apart from my 'normal' day to day problems, the computer has been broken and my fixer has been on holiday for a week, but I am now up and running again, thank goodness. I suppose it is sad really just how much we miss modern technology when it breaks down, but it has opened up so many positive doors. The sunshine over the last few days, has helped to brighten my spirits a bit, the trouble is, it shows up all the jobs that have been neglected around the house. Spring cleaning for me is definitely a thing of the past, but I am trying to prioritise, which necessary jobs I can face tackling first! Slowly, one day at a time! We have always previously done our own decorating, but that is a no-no now. I really need a new kitchen, but don't know if I can face the upheaval, and then there is the garden, we have cut back a lot and it is only small, but we may need to get some help with that. Not trying to bore you all, but thought maybe the the mundane stuff might help to take your/ my mind off the more serious , for a little while. Best wishes to you all. xx
It's the little things that keep us going! We learn the truth of this statement the further we get along this path that we call life. It's a little different, I know, but I find organising my home brings me solace. A little at a time, as otherwise it can be overwhelming. There's always something to do! I find it strange when people complain that they are bored... I don't think I have ever been bored at home! I find meaning in the little things and joy in my relationships. I need to find that poem I told you about... In the meantime, stay safe and stay as well as you can be X X X
You are so right. I remember as a child I loved snuggling up in bed when it was raining and windy outside, so secure. Feeling sorry for anyone who happened to be outside.! And I still do now! How weird is that? Another little thing, my grandma used to have Hovis bread, I'm talking about the mid 1940's here, when everything was on ration (no sweets or chocolate then), and she used to slice the crust off the top of the loaf, especially for me, and spread it with best butter. It was such a treat, I can still taste it now! Yummy! Sitting on my dad's knee in front of the coal fire, whilst he read me stories! or on a Sunday afternoon toasting crumpets for tea on a fork! Special memories can be so comforting and no one can take them away. Some poems can have a similar effect emotionally. and I look forward to reading your special one! Done very little this weekend, other than sorting out long overdue paperwork and stuff. Hope you managed to have an OK weekend, and at least got a few hours sleep. Thinking of you every day! xxx
... And instantly I am transported to your gran's cosy kitchen, to the delicious, incomparable aroma of bread freshly baked and buttered... to your sense of security as you sat, safe and loved and little and protected, in your dad's lap, his voice beautifully sonorous, that coal fire blazing away magically... to your Sunday afternoons replete with crusty crumpets and copious comfort! If you've conjured up this gem of a world for me, how much more vivid must it be for you! You are right: these memories sustain us as we battle with the rigours of our current circumstances. They are ours and ours alone: how rich we are - and how fortunate!
You have stirred so many memories for me... Water freezing in taps during winters harsher and yet more enchanting than this generation could ever imagine... The crunch of crisp snow underfoot as we hurtled down the alley ways of our youth, plaits flying, eyes streaming, cheeks ablaze in the biting cold… The irresistible shiver of leaves tossed by disobedient gales… The cobalt-blue light cast by the paraffin heater that we crouched around while unending power cuts scissored our nights and defined our days… The lush, sappy scent of freshly mown grass during spring afternoons that held the promise of impending warmth and haze and blaze… The stolid thud of willow striking leather as ivory-clad cricketers in the playing fields behind my house signed the air during languid summer Sunday afternoons as I sat and scribbled sense and nonsense at my darkly dark oak bureau, bowed with age and obstinance… Papa, enthusiastically concealed behind stubborn swirls of milky, ill-advised cigarette smoke and newsy newspapers piled high as he wrote and wrote and wrote furiously, copiously, angrily, brilliantly, pointlessly in the pine-walled breakfast room, his spidery letters claiming the political page, fascinating my child-brain, fuelling my childhood ambition… Mummy – so adored by her students, marking homework, delighting in quadratic equations and trigonometry and horribly complicated sums and theorems, overworked, stretched beyond belief, protectively anxious, meekly frowning, showering my days with infinite healing, shivering into radiators and blankets and shawls and other warming things, loving me, loving me, loving me with a tenacity I have never elsewhere or otherwise encountered… My menagerie: Sandy, the recalcitrant labrador, my two rabbits who miraculously morphed into eighteen, acres of budgies and canaries and finches, gobbling goldfish greedy for flaky fodder, a duet of guinea pigs I never met as my mother bought them for me as a surprise while I was away one winter with Papa, then left them out in the conservatory, where, to her horror and disbelief, they promptly froze to death. An only child, I tended to them all (except the deceased guinea pigs I never met) with a fierce protectiveness and ardour that only childhood and adolescence can bestow… Being bundled into the back seat of our Ford Granada, where I sang unselfconsciously, ardently and supine, to pass the time as Papa drove us across to Wales and up to Scotland and down to Brighton… And, above all, school, my beloved St C’s: I owe it everything. There’s nothing more to say.
Thank you, ShelWhitt, for triggering these reminiscences. There are so many more, and I will spend today largely dwelling upon them as I busy myself with admin and paperwork. I hope you indulge in happy nostalgia, too, as you go about your day 😊
Incidentally, I have found the poem I told you about. Look out for it on a separate post… It’s called “Chemotherapy”. Sounds clinical, but is so much more. Do let me know what you think. XXX
Good to hear from you. You do sound a bit more upbeat today. Lovely reading your memories too. Will look for your poem later. Feeling really tired and achy now, been out grocery shopping all morning with my youngest daughter, bought far too much and took far too long, just finished putting it all away. But mustn't grumble, it was good of her to take us on her day off! Off now to make a cuppa and put my feet up for a bit! Talk again soon. xx
I feel the same, exactly the same. Believe me you a re not alone. There are lots of us on here very much like you. Keep going, that's all I can really advise..xxxxxx
Hi
I do hope you are feeling a little better tonight than in the early hours. We are all here for you. Have you got someone you can talk to who will listen. You can pm me anytime of day or night. With all my love and hugs Lynne xxxx
Thank you Lynne. I know you are also having a rough time and appreciate your offering to listen. That is the thing, though isn't it. Because we can relate to the suffering others are going through, we feel we want to help in return , when we can. Sending my love and hugs back. xx
Thank you so much for your kind words.
I'm very lucky that I have such a good support network of family, friends and if course all our friends on here, you are all fantastic!! Pm me whenever time of day or night it is. Love and hugs Lynne xxxx
see below
Hello ShelWhitt I'm sorry to hear you're feeling so low. I spent many years feeling as you do now, so I do understand how painful and soul destroying the whole thing can become...it feels like there's no escape. But still, you have been very proactive lately, and you have indeed found out some very positive information that will help you recover certain aspects of your health. I'm sure that when those deficiencies that your recent tests clearly showed in both thyroid hormone and vits/minerals have been rectified, you will feel better and much more able to cope. I know my own body was unable to function at all with those levels, and I was also very depressed. In the meantime, I hope you have a more comfortable and peaceful night tonight 😴 x
I am sorry you are feeling so much pain. I am thinking about you.
Lora x
Thank you Lora. xx
As you have Hashimoto’s and are deficient in vitamin D and folate and have EXTREMELY low BELOW RANGE Ft3 these are clear thyroid related issues that need treatment
Thyroid hormones need GOOD Vitamin levels
Vitamin D at least around 80nmol and around 100nmol may be better
Folate at least over ten
Active B12 at least 70
Serum B12 at least 500
Ferritin at least half way through range
Low Ft3 linked to fibromyalgia
healthrising.org/blog/2019/...
thyroiduk.org/tuk/research/...
thyroiduk.org.uk/tuk/relate...
stopthethyroidmadness.com/f...
prohealth.com/library/new-t...
chriskresser.com/low-t3-syn...
clinicaltrials.gov/ct2/show...
holtorfmed.com/download/chr...
healthrising.org/blog/2019/...
A quick question.
10th Oct
Levothyroxine dosage prior to test 75mcg Mon - Frid. 100 mcg Sat - Sun
TSH level 0.34 mlU/L (0.38 - 5.5) Low
Serum free T4 level 20.7 (pmol/L (10.0 - 18.7) High
Dosage reduced to 75 mcg daily
19th Nov
TSH level 0.22 mlU/L (0.38 - 5.5) Low
Serum T4 level 18.9 pmol/L (10.0 - 18.7) High
Dosage reduced to 75 mcg. 50 mcg alternate days
21st Jan
TSH level 3.32 mu/L (0.38 - 5.5)
Serum free T4 level 16 pmol/L (10 - 18.7.
Normal . No change in dosage.
Private testing showed 20th Feb
TSH 5.58 (0.27 - 4.2) (high)
Free Thyrox ine 16.5 (12 - 22) R
Free T3 2.93 (3.1 - 6.8)R (low)
If you or anyone on here is able to provide a knowledgeable assessment of the above, any feedback would be appreciated. Thanks in anticipation.
Oct 10th
Dose was reduced inappropriately based solely on high Ft4. Never ever agree to dose reduction without getting full thyroid and vitamin testing
Do you remember if you took levothyroxine before blood test? This causes false high Ft4.
Last dose levothyroxine should be 24 hours before test. Blood test should be as early as possible in morning before eating or drinking anything other than water
When dose is reduced, vitamin levels drop...conversion of Ft4 to Ft3 gets worse and TSH drops, even though you are increasingly hypothyroid
January test shows you needed dose increase
TSH should be under 2, likely very low vitamins. Just testing TSH and Ft4 is completely inadequate
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
February test shows even more hypothyroid.
TSH far too high.
Ft4 only 45% through range
Ft3 below range
Very low vitamin levels as DIRECT RESULT of having levothyroxine dose reduced
healthunlocked.com/thyroidu...
Folate deficient - GP should prescribe
B12 insufficient - GP unlikely to prescribe. But will benefit from self supplementing. Aiming for minimum of 500
Vitamin D insufficient - GP unlikely to prescribe. But will benefit from self supplementing. Aiming for minimum of 80nmol
High thyroid antibodies confirms autoimmune thyroid disease
Strictly gluten free diet helps or is essential for thousands of Hashimoto’s patients
Joint pain often significantly reduces
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Blood test tomorrow for folate and B12 at 12 noon. Usually take levo. at 5 am. Should I not have food or drink other than water until after and also leave taking levo. until afterwards. thanks.
That’s correct
Test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Take your delayed levothyroxine after blood test
Hi ShelWhitt please dont feel alone we are all here to listen and support you! I was really low a few months ago and had to have my meds taken away and issued when required just in case I decided enough was enough one day. I am so lucky to have the most loving and supportive husband I think if I didnt I wouldn't be here today. When I was gradually getting better and able to communicate with the outside world, the support I recieved from people in this fibro fighting community definitely made a difference. I felt so much love and support. So, I think we all have had those dark thoughts, you are not alone! There is nothing like pain and sleep deprivation to make us feel like it's all too much and when we also have people who think and say "it's all in your head" it can be overwhelming. I am so sorry you do not have a good support network at home as you can feel isolated but remember we are all here to listen and help in anyway we can. We all feel your pain but please keep fighting life is worth it! If I can help in any way just ask but for the moment on sending positive thoughts love and peace to you. 💕✌🌈
Darrell, I appreciate every single word in your thoughtful response: I'm so sorry that my message back is so delayed. The last few days have been challenging, to say the least. I'm hoping your Tramadol journey is proceeding to plan? XX
What a lovely, heartfelt message, Zoonie, I agree with everything you have put. Take care Lynne
X X
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