Hello everyone! I am really hoping someone kind out there could shead some light or even comfort me a bit here. I am feeling a bit desperate now...
The story so far,and I'll try to keep it as short as poss:
I had a period of great stress in April, following a move into a new flat. within days my hands and ankles started to hurt to the point that I couldn't walk to the bathroom in the morning and hands felt like they'd been clenched all night (and still do). I had some severe cold sweats where my clothes would be soaked in minutes, severe sore throat and a thirst like i have never experienced in my life (I'm a 36 year old female from kent) and severe tiredness. I quit drinking alcohol and smoking and over about 2,5 months of rest the symptoms almost went away apart from the stiff hands and occasional fatigue and a shakey feeling where i need to lay down.
Now 2 weeks ago a sore throat started after another period of stress and some alcohol and cigarettes (two nights out), the sore hands are worsening, my sore ankes are back, i have a severly sore throat with white spots on the back of my throat, severe fatigue and some thirst and itchyness around my eyes, but not as bad as before.
My bloods have been taken over and over and I have had a CT scan and ultrasounds of my liver, pancreas, womb. It came back that I have some low level of inflamation in my bloods, elevated liver enzymes, high cholestrol and a small amount of fat on my liver and kidney stones.
I am a healthy weight, eat a very healthy diet and exercise moderately. I get sun and also take a vit d supplement along with folic acid (as i am trying to get pregnant for the first time), milk thistle, borage oil and a probiotic daily. I had glandular fever as a teenager, very badly and I also have a family history of auto-immune problems. Mum has mialitis of the spine, auntie (mums sister) fybromyalgia and nan has sjogrens syndrome and both nans have arthritis.
If anyone can relate, shed some light or advise, I would be incredibly grateful. It's seriously getting me down.
I know you will get lots of helpful advice from others in this forum. I'd like to suggest you reconsider the herbal supplements you are taking in case you are reacting to them in some way. I hope you find some help soon. It is sooo discouraging to be in pain for a long time.
Thank you for getting back to me Anhaga. I will definitely look into that. I was thinking of stopping all the suppliments for a bit to see what happens. I have cut dairy out of my diet recently too.
Hi Anna, what are the medics saying is wrong? They seem to have done quite a lot of tests. Did they check for rheumatoid arthritis? It does not sound like you have polymyalgia though. Was your vitamin D level checked?
Hi there ptolemy, thanks very much for responding. The docs have said that they cannot find anything wrong. They're keeping an eye on my liver function as the enzymes are up and there is fat, but apart from that they have told me that they think it's stress related and just gave me antibiotics for my throat. I have had full blood work done 4 or 5 times over 6 months, testing for signs of autoimmune disease but nothing showed up, apart from some mild inflamation and the liver enzymes raised + cholestrol up slightly. Not sure if RA was included in that though. I have an appointment in Oct with a specialist in autoimmune disease at a good hospital. I made that off my own back that is my gut feeling or potentially ME. I haven't had my vit d levels checked though, but I have just started taking a suppliment daily 1000 iu vit D as I thought that might help...
Thanks for getting back to me LodgerUK, having people to share this with is already helping with the stress. I have been feeling that people think I am making this up and that I am using it as an excuse to get out of things. It's far from that. The more I feel that from people though, and friends get fed up of me cancelling last minute, the more stress builds. But I have had to start putting myself first now and I have to accept I might lose friends from being unreliable. I just know that when a wave of this comes over, I have to go to bed. I have even closed facebook and switch my phone off regularly to get complete peace. re: the dairy - I stopped the dairy as a vegan friend recommended it. I always had butter and free range organic eggs and milk and eat lots of fruit and vegetables and oily fish. Now I am having coconut oil and milk instead on the dairy. I will defintely look into Bowen Therapy, thank you for the recommendation.
RA is an auto immune disease as is ME, so it should be interesting what the specialist says. People can suffer for literally years sometimes with undiagnosed auto immune diseases.
A friend of mine had ME after a very bad bout of flu. Her symptoms were very similar to yours. She really was ill and it took a long time for her to get back to normal.
Hope you sort your problem out very soon. There might even be an ME forum on this site you could try.
Hi Anna, I'm new to the site got diagnosed with Polymyalgia 3 days ago and still getting my head round it all. I can sense your frustration and distress and hope you get clarity so you can start to sort out your life. In my case about 4 weeks ago I started to experience pain in my feet an shoulders then thighs hips knees neck wrists and back! Pretty much everywhere. To cut a long story I went to my GP twice to try to get medication for the appalling pain I was in, first visit I only got offered blood tests in 10 days, but went back following day in tears at the pain and unable to stand up or walk. This time I was given steroids (predisolone) on a very high dose 8 x 5 mg a day and literally 2 hours latter the pain faded away! The diagnosis was based on the dramatic success of the steroids and my age. I was using other painkillers for different things but these didn't have any effect. Think what I'm trying to say Anna in moments of desperation good things can happen, keep looking into getting the correct DX think I've been lucky to find the right meds (I hope).😄
Hi Tony, thanks so much for your message. It sure is comforting to know that I can talk to people about this and others out there understand my frustration. I actually woke up feeling more positive this morning because of these messages. I feel a step closer to getting a disagnosis as I know what to ask to be tested for now and can explaiin my symptoms better to the doctor. I wish you all the best with your health and thanks again for your words of encouragement !
Hi Pauline, Thank you! all of these words of encouragement have made me feel so much more positive today. I have an appointment in October with a specialist and now feel better equipt with what to ask for etc. Best wishes to you
I suspect it is mostly down to stress - no autoimmune disorder responds well to stress and having glandular fever does tend to leave a bit behind and the family history of autoimmune disease does make it more likely. If your sore throat has white spots it probably is bacterial. I assume you have had your blood sugar levels checked in response to the terrific thirst - although drinking plenty of non-alcoholic fluids is also important.
Your age does make it slight LESS likely it is PMR though I emphasise it isn't impossible despite what some doctors will try to tell you! Raised liver enzymes are seen with that - again, a lot of doctors don't know that either. I had something that sounds very like what you have when I was in my late 20s, I was quite poorly for about 6 months and then it all improved dramatically - just as I got to the appointment with a specialist. He decided it all looked like a viral infection that had finally cleared up on its own as they usually do. The fatigue persisted for several years when climbing stairs for example - but then, I also had a little girl by then and having kids doesn't help the TATT syndrome (tired all the time)! In retrospect, it is fairly likely that it was a mild case of ME/CFS, it fitted the acute phase which lasts at least 6 months and then is followed by the fatigue - but it was still called yuppy flu in those days and not taken seriously!
I really wouldn't omit dairy from your diet - in fact if you cut anything, cut down on carbohydrates because they contribute to raised cholesterol levels (I know, doesn't make sense unless you do biochemisty at uni). Vegan is all very well and I am not decrying it done properly but unless you go to a great deal of effort you are not taking enough protein and that is bad for you, especially if you want to get pregnant Of course a vegan friend will recommend it!
I do hope you find some answers. Your blood tests do suggest there is something going on but you are seeing a specialist who may see something that the others haven't seen. But as I say, stress can do an awful lot of things - especially since you have now decided to try to have a baby at an age where you must be aware it isn't going to be as easy as it would have been at 26. That isn't a criticism but biology works the way it works and there is no changing that.
Thanks Eileen for your detailed reply, there's a lot of useful information there. I do eat a lot of carbs and I am now reconsidering the dairy thing - I think I might go back to eating my freerange eggs in the morning. Yes and as you mentioned, I am aware that getting pregnant will not be easy at this age - but unfortunately, I only met my partner a year ago and he only wanted to start trying 4 months ago - which was still very soon for him, but he realises that the clock is ticking! I would have loved to have started a family sooner, but I didn't have a partner for many years so it was a bit tricky. who knows, if my health picks up, it could happen. I had a big fibroid removed from my womb in 2012 though and had to have a c-section type op as keyhole surgery didn't work - so I wonder if that will also affect my chances of getting pregnant. Anyway, thanks again for your email, it was really useful, have a lovely weekend
Thanks Christine for the good advice. I am going to keep up with the no drinking - as it seems to have been part of the trigger with my recent flare up and I will definitely cut down on the carbs, seems like a lot of people have said that. I also decided this morning not to quit dairy and had a nice breakfast of eggs, smoked salmon and spinach. Thanks again for all the useful information..