Please read, I’m desperate for some help

[Coleyyywo]

Hi, will try keep this brief.

For the last 9 months I have been very unwell. It start in 2018, I felt like I was coming down the flu, general unwell feeling all over body, aches etc. throat feels tender. But it didn’t develop into anything, just kept coming and going throughout the days. This went on for few weeks, then it completely went, then 9 months later it returned but worse and lasted for longer, then after a few months it disappeared again.

Then around 1year and half later it returned, but so much worse, I have no quality of life, I feel so unwell, but I’m so bad at explaining that exact symptoms. It feels just like you would feel when coming down with the flu. I have had so many bloods done which all came back normal, apart from inflammation was raised.

Doctors have been so unhelpful, they think it’s depression or that I’m imagining the pain. Which I find so so insulting, I’m in so much physical pain, some days I feel okay but mostly it’s in the background and at least a few times throughout the day it peaks.

I have been referred to rheumatologist finally but very long waiting list. I just wondered if anyone else had been through this? I don’t know how to cope anymore, I honestly worry they will never find a diagnoses and I will be housebound forever, in pain.

Just to add also, I have recently been diagnosed with what they think is a second branchial cleft cyst, which needs surgery to be removed, but they don’t think it’s related to my illness.

I’ve had my thyroid and everything checked, they also did ANA blood test to check for lupus but that came back negative.

How do people live in this much pain, everyday waking up like this? I’m also very worried what ever it is is doing a lot of damage, the pain is becoming worse and also now can feel on my chest like I have a chest infection (without cough or phlegm)

Anyway any advice would be amazing, thank you so much

[Atticus64]

Im so sorry to hear of your pain. You are experiencing a lot of unexplained pain and it sounds awful. Some questions. What do you mean by inflammation in your bloods? Can you be more specific? What's your diet like? Are you taking supplements? Are you exercising? How is your sleep? I hear you on not being believed. If you reply I'll write more.

🙂

[Coleyyywo in reply to Atticus64]

Hello, thank you so much for your response. So a few months ago my CRP was raised doctor never looked into it but just said I’m probably fighting an infection.

My diet is fairly healthy, I am vegetarian (have been for 10 years) I eat gluten free and include a lot of veg in my diet. I am celiac but that’s been under control for years.

I don’t exercise a great deal as I’m so unwell most of the time, I try to go for short walks on my good days. I sleep okay, I am not fatigue.

It’s so frustrating because apart from my family no one else in my life understands, I’ve lost all my friends and I’m unable to work because of how unwell I feel.

Thanks again for your response

[Funkyfaerie]

Hi,Just to say, I used to suffer the same flu like symptoms on and off, and sore throats. It actually was anxiety causing it for me, I couldn't quite believe it at first, as I used to take paracetamol to relieve the symptoms and they didn't really work.

If you take a look at Anxietycentre.com and check out their symptoms list, you will see flu like symptoms and sore throatslusted and explanations.

You've had lots of tests done and had it on and off for a while, try not to worry. I still get it sometimes now, so does my brother, we are unfortunately an anxious family, but I don't worry about it now.

Hope this helps you a little.

[Coleyyywo]

Hi thank you so much for replying, I was hoping you could give some more info on your symptoms. I find it really hard to think my symptoms are related to anxiety only because the pain is quiet intense, was you the same? Was your whole body in pain? And did your symptoms stop you from doing every day activities? Did you actually feel anxious when the symptoms came on?

It’s just I don’t feel at all anxious I just feel sad and defeated.

Thanks so much

[Hidden]

I suffered flu-like symptoms with sore throat pretty much every month for about 5 months and lost my job over it. After a lot of tests my doctor came to the conclusion I had M.E.I wonder also if it could be fibromyalgia which produces similar symptoms but often more joint pain.

[Coleyyywo in reply to Hidden]

Hello, oh I’m sorry to hear that, are you able to manage the flu like symptoms with pain relief? I did wonder it might be fibomyalgia, but was praying it wasn’t as I heard there isn’t much help out there for fibo :/

[Hidden in reply to Coleyyywo]

Yes, with Fibro & ME you just treat the symptoms. I have arthritis and nerve pains as well now so my stronger meds deal with it all, all I am left with is the exhaustion - made worse by my recent diagnosis of Liver disease.😑

[Batty1]

Sorry that your feeling so bad it definitely sucks. Have you ever had a thyroid ultrasound? If you can post your thyroid levels including the lab ranges and anxiety definitely can happen when your constantly stressed out with pain

[Coleyyywo in reply to Batty1]

Thank you for responding. I have had an MRI on my neck (this was due to a cyst I have in my neck and they were ruling out cancer) I’m guessing they would have to checked my thyroid on the MRI but not sure. I need to get a print out of my blood results, as I don’t know the exact readings, but the doctors said they checked my thyroid and the levels are all normal

[Batty1 in reply to Coleyyywo]

I can tell you from my personal experience normal is not necessary normal I spent years being told my throat pains, panic attacks were in my head only to actually find out by accident that I had thyroid cancer. You need to have ultrasound of the throat.

[Coleyyywo in reply to Batty1]

That’s awful, I’m sorry you went through that. Would you recommend I chase my doctor for the ultrasound or to wait for my appt with the rheumatologist?

[Batty1 in reply to Coleyyywo]

You should obtain copies of your recent thyroid test and post them here and let others comment and recommend next step …. Its my personal experience that just because labs are in range doesn’t make them appropriate level for you and thyroid issues can cause lots of problems. Post thyroid results in the thyroid forum along with issues your having.

[Valerie58]

1) It may be worth paying for the initial consultation privately they are often less than £100.Sometimes they will then put you into NHS system

2) All you can control is your diet and fitness. Make sure you are eating a healthy diet and you are at least going for a walk every day and it sounds as if you are.

If you are being good about everything else eg not smoking I then find the medical people take you seriously. Good luck.

[MumblingMowgli]

Hello, I have lived with chronic pain for 8 years(diagnosed, 20 undiagnosed) for years it was called growing pains or I was told there was no injury so there can’t be etc. I find when I am down on myself my pain is worse, our emotions can play a big part on our health but they aren’t necessarily the root cause of the pain. I manage by doing little and often, I work between 1.5 and 4 hours a day, I have regular breaks when at home doing house work or if we go out for the day we plan plenty of stopping and resting (sometimes using mobility scooters or taking advantage of some attractions “queue jump” schemes).

The first 6 months after diagnosis were the worst for me. I was 21, I couldn’t have a life long condition that was going to mess all my plans up and I wasn’t going to change a single thing I did because why should I?!? Well the answer was because I crashed and burned into a big horrible mess just days after my 22nd birthday 3 weeks recovery time, back to work on reduced hours (I went from 50+Hrs to 27hrs a week), I decided to shake up my life, I went back to college, went on a first day with my now fiancé (faked it the whole way round a zoo and when we watched something on tv and the discussed fibromyalgia I said I’ve got that, to my own surprise, and said yea I know you posted on Twitter about it and then called me an idiot for walking round the zoo in agony like it was a leisurely stroll).

Chronic pain doesn’t mean the fun, the laughter, the excitement and tears of joy have to stop. We just adapt and create those moments slightly differently.

Re phrase the “I didn’t get all the house work done today” to “Today I emptied the dishwasher” because some days you may be able to get lots done other days just putting your socks on will be tough, but do not sit there and tell yourself you can’t do it. Try to tell yourself what can I change so that I can do that thing I want to do. One example for me was travelling on an aeroplane, I used to fly by myself all the time to visit family, but that has got harder as I struggle to stand in queues with out agony and carrying my bags, so I started using airport assistance, and 2 years ago I flew all by myself to my cousins wedding. We use air port assistance all the time now as it means I can sit rather than stand in queues and we are first on last off the plane which we don’t mind.

J

[hannahpr1818]

This has been my reality for years. I’ve noticed recently when I’ve been thinking about it that I think it’s triggered by certain things. I would always feel like this after nights out but especially nights out in the winter. Even in the summer it’s happened to me. I had an intolerance test done by someone that was recommended to me and a lot of stuff came up. Some I was expecting some I wasn’t. I saw you say above about gluten etc all of these were flagging up on my test.. but also alcohol and chocolate. The cold weather does some unusual things to me too that I was always told were normal but clearly aren’t. So does heat. A few years back I was really unwell with these flu type symptoms and at one point both of my ears were fully blocked and I couldn’t hear and had to beg them to syringe them as my nose was also blocked and felt like my head would explode. I also get the throat type of feeling and it always feels like I have swollen glands/dental pain. My face even swells up and looks different on both sides when I’m having these flu like symptoms and I now rarely have a day where I’m not in pain. Do you have any other strange symptoms that you think are possibly related? I know how you feel about the doctors just brushing you off.. especially when you feel so lousy it’s hurtful. Sorry my reply is so long!

[Coleyyywo in reply to hannahpr1818]

I’m sorry to hear you are having a horrible time, it’s awful being in chronic pain, has your docotr referred you? I pushed for a referral to a rheumatologist and am currently waiting for an appt. It’s my last hope that they will help, as I cannot afford to go private x