Hi everyone, i am still worried about my health. All of my doctors are saying its got to be anxiety but i honestly don’t think its anxiety, I’ve had it all my life and this is something different. Since January i have been poorly with pain all over including chest pain, pain in my arms, feet, neck, head, face and tummy. I feel breathless a lot even though when i have gotten ecg and tests done my levels are okay and i am not breathless. I get heart palpitations a lot and really bad anxiety ever since January buy i think the heart palpitations will be linked to my anxiety. I also need to go to the toilet a lot. Blood tests show that everything is fine apart from low iron levels b9 and b12 but i have gotten tablets and injections for them. One other thing is my thyroid but they said its minimal and shouldn’t be causing this and is most likely my anxiety. I am sure it isn’t my anxiety, i have also gotten swollen lymph nodes in my armpits and neck. Can Fibromyalgia run in the family? Does this sound like i have it? I am so weak and tired all the time and i get out of breath even when i stand up, it all started with chest pain and then loads of other symptoms. The pain wont go away and comes and goes a lot. Sometimes when i am trying to sleep i get a shock sort of feeling which jolts me awake and my hands and feet are numb, no idea what that could be its only when I’m starting to fall asleep and it feels horrible! When i wake up i sometimes feel lightheaded. I get horrible migraines as well. All of this might not be related together but just saying whats been going on.
Sorry its me again, I’m still worried. - Fibromyalgia Acti...
Sorry its me again, I’m still worried.
Hi again I was thinking of you today.. sorry your still not right. It can take months to right a deficiency... have you looked onto adrenal fatigue? All these auto immune diseases are interlinked and not helped by gluten or poor diet and can lead to severe nutritional deficiencies.. I even read that gluten can cause your thyroid to malfunction. It sounds like it could be a number of things. B12 thyroid vitamin deficiency, low iron, correct each one and wait for symptoms to dissipate go private if you have to but get help... xx
Hi again! how are you feeling today? Hope you’re doing okay! I will read into the adrenal fatigue, I’m just trying to rule out what it could be because I’m not getting anywhere with my doctors but I’m going to keep on trying xx
If you want to find out more about fibro while you’re researching that, this article contains useful info from Daniel Clauw who is a rheumatologist and one of the foremost authorities on fibro:
aarp.org/health/conditions-...
As he says, it’s not an autoimmune disease and definitely not a psychological condition. It’s a disease affecting a person's sensory processing system.
Still the same as you identical symptoms.. that's why I've gone private because I'm convinced its thyroid related... these things have slowly and insidiously gotten worse. Started as palpitations and escalated to chest pain. It's not anxiety. Anxiety is a result of your body reacting to the illness. Whatever that may be. Your probably not even an anxious person... I know I'm not at all. But when your jumping out your skin at night in your sleep for no reason you have to ask what's causing this. That's why I've said go private if you can.. conventional gp's are called general practitioners for a reason. I noticed a huge difference in care going private just for an infusion of iron. You will find it an uphill struggle with then they're just not interested and your wasting your time. If you cant go private for treatment at least try and test your bloods privately and then go from there.
Is it expensive to go private? I will try but i don’t know how to come about it. Hopefully if i do i might get some answers. I’m glad that you know its not anxiety either! Its definitely what you said, our body reacting yo the illness. I am an anxious person but this is something way more than just being anxious its horrible x
I know... like me you need to get to the root cause. I know this is a stupid question but do you have ridges or lines on your nails?
I do have them slightly in my nails
That's a sign of thyroid or vitamin deficiency if they are vertical
or diabetes or a vitamin deficiency. Its also normal in older people.
thats why a GP and tests are required.
Yes absolutely!
Google tracy wittys website b12
Hey, sorry you’re still feeling awful. And there’s no need to apologise for asking us anything!
So, to answer some of your questions. Fibromyalgia is not hereditary as in it is not passed from parent to child. However, it can cluster in families occasionally - so there may be several people in a family with it. In short: anyone can get it, but if someone in your family has it certainly doesn’t mean you will.
Your symptoms do chime with some of the characteristics of fibro, but it’s one of those diseases that causes a lot of confusion and there are other things that could cause these symptoms too.
The thing that concerns me most about what you’ve said is the swollen lymph nodes. This needs looking into ASAP.
If I were you, I would take the opportunity of your GP being closed for Easter to see an out of hours GP who might pay more attention to everything that’s going on with you. You can arrange this by calling 111.
If you do go down this route, write all your symptoms clearly on a single sheet of paper before you see the doctor. Add a sense of how long this has been going on too. This can help them to see everything at a glance - and I find they take you more seriously if you’re organised and paint an accurate picture.
Sending you a big hug 🤗
P.S. I was diagnosed with Rheumatoid Arthritis when I was 25. It took me 2 years to get the diagnosis as many doctors dismissed my symptoms, especially as I was young. Be persistent with them.
Thank you very much! I’ve tried talking to them about my swollen lymph nodes but they care more about my mental health rather than my physical health at the moment so its hard to even get an answer. I will write down everything for when i next see my doctor as it might be easier for me to explain, thank you for your help!
That’s not massively helpful for you, is it?! Out of interest have they run blood tests for autoimmune disorders do you know?
They have run blood tests for my heart, liver, thyroid and kidneys but i don’t think they have for autoimmune disorders
Ok, it might be worth requesting these - if they will play ball - to help rule anything out.
If you've had a thyroid panel have you checked of it was a full thyroid panel with t3 t4 and antibodies you have to push for this because they will only test your tsh and then do the rest if your tsh is out of range
Is your heart rate varying when you go from lying to standing? If the palpitations are only when you are upright, it could be a form of autonomic dysfunction x
This could also be the low iron. Anaemia is known for causing heart palpitations: nhs.uk/conditions/iron-defi...
If the discrepancies only happen when orthostatic, then it’s autonomic dysfunction. If it happens all the time it could be the low iron
I was thinking dysautonomia, like PoTs syndrome.
Hi try looking at mitochondrial dysfunction. I am autistic and I have it. It is genetic, and appears differently in family members. I do have fibromyalgia, gastrointestinal problems migraines asthma low folates and more. This is relatively new and hardly known by UK GPs.
Hi there, may I ask what your GP said about your swollen lymph nodes?
Hi there, the reason I think your GP thinks it may be your mental health and the reason I also responded in your previous post that it maybe due to anxiety is because from what I read Enlarged or swollen lymph nodes can occur with certain infections, such as mononucleosis. Anxiety can be a symptom that accompanies physical illnesses, or it may be indicative of an anxiety disorder.
I am not a doctor. But I have been through and dealt with all the things you have posted. Its horrible and hard to understand why we think the way we do. I still suffer to this day. All doctors are not right all the time. But I learned they are not always wrong either. I feel for you and can completely understand and empathise with how you feel.
But it is something you and your doctor needs to work out together. If the GP believes its your mental health causing your problems and anxieties then he/she should be doing more to help treat those issuies xx
They have done blood tests for infections and its not that. My tonsils do keep getting inflamed for some reason and it was hurting badly to get food down as it felt like it was scraping and cutting across but i had antibiotics for this and i can feel it coming back. Thank you very much, i am waiting for a mental health assessment but told i will be waiting 4-6 weeks for one xx
I know you asked about going private. I’m not actually sure what sort of specialist you could see privately yet as this is quite a cluster of symptoms. And all the tests you’d require would be quite pricey.
So... I wanted to draw your attention to private GP services instead. There are a couple of excellent online ones (and some awful ones). I have a subscription that costs £11.50 a month for a 24/7 GP hotline and 24/7 mental health helpline.
If you’d like to discuss this possibility, PM me and I’ll give you the details xx
It’s definitely one for the GP! The lymph nodes are a puzzle though, you’re right.
Interestingly, before I was diagnosed with rheumatoid arthritis, I had swollen lymph nodes and they told me they thought it was glandular fever. Then a few weeks later they changed their minds 
Swollen lymph nodes can be caused by a low grade infection or inflammation, it's not caused by anxiety. You can get swollen lymph glands with a bad flare of psoriasis or eczema aswell. Tonsillitis will also give you swollen lymph nodes if it's untreated and goes on for a while.
Hi LoneEra can you give me the details to your GP subscription? What do you get out of that?I am 31, and when I was 25 I got diagnosed with Meneires, then at 28 fibro, but honestly I haven’t gotten to the bottom of my problems and although my GPS are lovely it’s weeks before I get to even speak to them😃
Of course - I’ll PM you the details. But basically you have access to a GP on the telephone 24/7 (you book an appointment and they call back ASAP). The same goes for a mental health professional. Because it’s private, they listen to you a lot more - or that’s been my own experience. They give you advice or prescribe meds and then write to your own GP to update them. For the price, it’s great value. Anyway, I’ll send you a link now 🙂 x
Hi I have been diagnosed with menieres and fibromyalgia too. I never know which causes my symptoms
I know I have just spend 3 days in bed with neck pain and head pain for what? Nothing haha I didn’t jolt myself or anything just comes on like a headache and I get the pressure in my ears. Have you ever had the injections? They r inside the ear? They help with the dizzy spells but now I can’t bare the pain so I haven’t had one for a bit
Hi, you don't say how low your B12, folate and iron are, but I'd be amazed if you weren't anxious. When mine were low I'd wake up at 3 am shaking with anxiety. Have they given any reason for them being low? Might be that you aren't absorbing because of something like Coeliac so worth getting that tested. Or is diet very restricted? Might be worth posting actual results with ranges, perhaps on PA forum too. The jerks that wake you could be low B12 (or low vit D) as well as the numbness. Best to check vit D and I'd try some magnesium, maybe an oil spray like Better You, before bed to help you relax and sleep. Have they checked blood sugar, given frequent visits to the loo? Best wishes
My b12 and b9 was quite low and i had all the injections and i am taking medication for them. I am very anxious, especially at the minute its really bad. They haven’t told me why they were low. They have checked my blood pressure, a lot of blood tests and done ecgs but nothing else. They are focussing on my mental health because they think its anxiety when i know it isn’t. Ive suffered with anxiety and depression ever since i was a little girl and this is something different
Hi, I am sorry you are having to deal with all this but try to remember that you can and will feel better than you do now. Lots of lovely helpful people on here and other forums to give you a bit of support when you need it.
Do you have family members with autoimmune conditions? (like Coeliac, Diabetes, Pernicious Anaemia, thyroiditis (Hashimoto's or Graves'), Lupus etc - there are an awful lot of them) They aren't directly inherited but do tend to run in families so it may give you useful ideas to have a think and ask around. I found I had thyroid issues on both sides and 5 generations of either B12 deficiency or diagnosed Pernicious Anaemia.
I found it essential, personally, to get copies of my old test results, so I would recommend that you do that when you can. If you are already online for appointments you may already have access, if not just ask the GP and they will tell you what to do. I just ask for printed copies every time, which you are perfectly entitled to do. Then you will know what was tested, how low (or high) before treatment and how low or high now. I would be saving my money and not going private yet. Once you've got test results you can do at home testing to fill in what hasn't been done (if GP refuses). As Hettybettyyyy says, thyroid testing is usually only TSH and you need FT3, FT4 and 2 lots of antibodies to begin with.
Low vitamin D is common and can cause chest pain and anxiety. Hopefully you will have a result already, easily tested at home if not.
It worries me that you say you had all the injections. For B12 they do loading doses if you are low but they should have carried on with those (as you have neurological symptoms) until they stopped improving. As you say you get numbness and burning, it doesn't sound like yours are improving. Were you vegan/vegetarian when your B12 was low and have changed to now eat meat etc for your B12 - you need to know if there is a simple reason like lack in diet of B12 (or folate - not enough green leafy veg?). Otherwise, need to try to establish what is causing the deficiency. Have they just prescribed oral B12 or are you on regular injections? B12 deficiency is potentially serious. If your GP thinks that they should be addressing a perceived mental health issue and ignoring your B12 deficiency (which may well be causing both anxiety and depression) then they don't have much of a clue (fairly common, sadly). Has your anxiety got worse or better since they started to treat B12 and folate? It is normal for numbness/burning etc to get worse initially as you get regular B12 rectifying the damage. I wonder what kind of B12 and particularly what kind of folate they have given you. You may be better with a different kind.
Given that you mention swollen lymph, tiredness, breathlessness and burning/numbness as some others have mentioned you may have some combination of Sjogren's/Dysautonomia/POTS/Small Fibre Neuropathy. If you can't get the GP to take the B12 seriously, I would try to get a neurology referral.
Sorry this has turned into a bit of an epic! If you have had anxiety and depression since childhood, has anyone ever looked at food intolerances or sensitivities? It is well worth getting checked for Coeliac because it is the best test we have, but it is by no means perfect. Gluten (gliadin) can cause both anxiety and depression, whether you turn out to be Coeliac or non-coeliac gluten sensitive. ncbi.nlm.nih.gov/pmc/articl.... It took me 52 years to find my gluten sensitivity and 40 years of 'impossible to shift with everything thrown at it' acne just vanished as if it had never been there.
One step at a time x
Good advice
I'm wondering if you are getting yourself into a feedback loop. You are in pain so you worry
a lot, then you feel another pain, so two pains you're worrying about, then another pain and more worry, and it goes on round and round.
Do you have anything which could help you relax? Meditation maybe , or something else that you can distract yourself with? I know this feeling, been in the same loop myself.
Cheers, Midori
Hi Jirachi, I feel for you I really do, I was diagnosed with fibromyalgia about 3 years ago, I have been suffering for 5 years, I think I have been in denial since my diagnosis, whenever I have something wrong with me I’m constantly on google, I have had blood test after blood test and all the X-rays, to cut a long story short, I manage my pain ok ish, but at Xmas I was hit with this fatigue along with other weird symptoms, more blood tests, doctor told me it was side effects from fibromyalgia but I couldn’t accept it , I went to a very dark place, had all the symptoms you had my GP told me it was anxiety and depression. I visited this site, which had been a godsend to me, the lovely people on here have helped me so much. Doctor prescribed me duloxetine, I also take vitamins, super B complex,magnesium, Q10, oh and and GP also prescribed vitamin D. 3 weeks on I feel better not cured but better than I did, especially my constant worrying, and my aura migraines have settled. I agree you must always get new symptoms checked out, my GP told me anything different come back, I think that’s why I am always there. I don’t want this vile thing to take over my life, I don’t google anymore, I come on here and read what others are going through. What a lovely bunch they are. It’s so helpful to know you are not alone. I do hope you get sorted soon. God bless you xx
I am sorry you are going through all of this as well! I always tend to google things and i get scared thinking something really bad is happening to me. How long did it take you to get diagnosed for Fibromyalgia? This whole thing has been really frightening. I get new symptoms every week and i keep getting burning sensations around my body as well xx
Hi, it took 2 years to get diagnosed. The pain then was unbearable everywhere, shooting stabbing pain like someone was jabbing a screwdriver in me, and the tingling and burning was really bad, my chest was worse really scared me, I bought a electric throw and used to wrap myself up in it. Then came the fatigue I couldn’t cope with it I was sure the doctor had missed something, migraines, lightheaded, hissing in the ears, smell up my nose, you name it iv had it, then when the doctor told me anxiety and depression, and reading everyone’s posts on here it all made sense, so I thought I would give meds a try just to calm me down. I joined a fibro support group that helped me a lot, but we had to close due to covid, I have found the more I talk to others going through the same as me really helps. Good luck my lovely, hope you start to feel better soon. Xx
That sounds awful! I hope you’re feeling a lot better now! It sounds very similar to what I’m experiencing as well though! I come on here to see if anyone has experienced the same thing so i don’t feel so alone and i know what it might be xx
I am feeling a lot better thank you. There’s a lot more folks a lot worse of than me. I am sure you will get a lot of help from this site. Good luck xx
I have diagnosed fibromyalgia, hypothyroidism and insulin dependent diabetes decades ago..... after years of fine tuning meds and vits/ minerals I am still in 24/7 pain and exhaustion, and now getting resistant hypertension ( no drugs lowering bp). Bought an oximeter and found my blood oxygen levels can go down to 65% at night, while pulse can rise to 145 doing simple everyday tasks. Got a private ( thru Hope2Sleep charity) sleep apnoea test last weekend and have mild sleep apnoea, and have an nhs appointment to see Lung/sleep consultant mid May, to see if there is a link to pain/exhaustion. It is just that you mentioned episodes connected to sleep...have you considered sleep apnoea?
That sounds very scary, I’m sorry you’re going through all of this. I am not really sure what sleep apnoea is. I do have troubled sleep which includes sleep paralysis a lot, waking up with heart palpitations and the horrible jolts when i am closing my eyes ready for sleep and makes my hands and feet numb
I am new to sleep apnoea too, had to try to do it all DIY as GPs not having any patients...if it can’t be diagnosed by blood tests then that’s it. It’s the jolting from waking that sounds like body waking up thru low oxygen, but it might be other things. There appears to be little on websites other than diagnosis, and couldn’t find a forum like the healthunlocked ones, but might be worth looking up Hope2Sleep.
Hi Sorry to hear you're not well.From your symptoms they are exactly like I have I've got fibromyalgia and panic disorder both are linked because fibromyalgia is a neurological illness, I think you have got anxiety and fibromyalgia,try listening to managing anxiety and pain either on cds or download on mobile.Over thinking is not helping you try to think positive.Sending you a big hug 💕
You have been given some good advice and suggestions - however can I make an observation..... You have posted a few times regarding symptoms and your gp putting everything down to anxiety - which I understand fully, took me 12 years to get diagnosed with it being blamed on my mental health /anxiety.
However, I'm also concerned that you have now had so many suggestions to "potential causes" of your symptoms that this may actually end up causing you increased anxiety and stress.
If you are getting nowhere with your gp surgery - is transferring to another local surgery an option. Or maybe contacting PALS - they may be able to advocate on your behalf and help you get your point over to the gp that you are concerned that something might have been overlooked by focusing on your mental health.
Hi Jirachi, I think it is important for you to understand that none of us can possibly diagnose you online even if we are medical doctors. We are here to lend an ear to support you, but you won't get the right answer to "what is wrong with me". In fact, all the possible conditions that you have received from online strangers may just make you worry more and make your anxiety and depression worse. I strongly encourage you to connect with an IN PERSON support group and to seek second opinion from another GP. Many medical and psychiatric conditions take time to be diagnosed accurately. Please be patient with yourself and your providers.
Hi feel for what yr going thro so much...being deficient can take time to correct. It maybe worth do some research on fibromyalgia...some of yr symptoms sound consistent with it but you'd require this to be considered by yr go...keep searching tho as it's yr body & you know what's right & what's not...take care & do try relax as best ya can...find ways in which to aid calmness...plz keep us updated with what you find xx
only use GPs as my first point of contact. They only run basic bloods and wont do auto immues, lupus etc unless instructed by consultant. Its the current trend to blame everything on 'anxiety' it used to be 'virus'.If I were you phone up your local private hospital and see a private rheumatologist. Costs vary between £120 - £250 but well worth it for immediate appointment. They can then list all the bloods to consider. GERD also gives you terrible anxiety.
Have you been tested for thyroid antibodies? It sounds like you have hypothyroidism and need to begin thyroxine. A lot of your symptoms are pointing to this including the anxiety. You need to get your results and learn what they mean. Have a look at the thyroid site on here. Doctors often fob patients off with thyroid issues. You will need to stand firm and ask for a trial and then gradually build up a dose when they see it helps you. You also need to keep an eye on B12, D, ferritin and folate as they help with absorption.
Good luck.
Karen
Hi Jirachi, I'm not absolutely sure, but it sounds like it might be worth you having a coeliac screen. I only say this because my son's girlfriend has coeliac disease and she had the same symptoms. With regard to your thyroid, it can make you feel anxious if your thyroid isn't working properly, due to physical issues with your thyroid, not stress or anxiety by being anxious about not being well! Does that make sense? Pester your doctor some more until they listen to you.
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