CFS, LUPUS or something else entirely....don't know what to think.

Brain and nerves
1

Been ill on and off for 21 years. Had a virus when I was 10 - suspected glandular fever as tests all clear (recurring sore throats, went pale, passed out a couple of times, frequent nausea, no appetite, became more withdrawn and anxious), weight loss.

I have never been the same since.

Ever since I have gone through highs and lows, each low being somewhat worse than the last, usually with at least two years between - basically once I get back towards having a normal life with normal levels of activity/stresses.

Symptoms have included generalised fatigue (nowhere near as bad as now), sore throats, awful IBS (abdominal pain, nausea, diarrhoea, indigestion, excessive burping), foggy mind, inability to concentrate (though think I've always found this hard!), skin issues (dryness all over and scaly and sore on scalp), big increase in amount of hair that comes out when I wash or brush my hair (I block the plug hole every time, never used to).

This time the 'crash' has been the worst ever - I was working long hours/commuting, but I was eating more than ever and healthily - though I was stressed (bully at work), but my work was outdoors and very active, however instead of fittening up I got more and more tired, my IBS restarted and got seriously out of control and one day when I went to get up, my body just said no (shame as my issues had been resolved at work and things were about to change greatly for the better!) - thought I had the flu but never went back. That was two years ago. I was ill with not only my disabling ibs symptoms, but also dizziness, low ferritin (5), breathlessness, especially - but not only after exertion (i.e. just going upstairs), terrible fatigue and an ever decreasing variety of diet as my ibs/ eating seemed to be triggered by eating, so was put on mebeverine three times a day which did help, yet still could not put on weight, and have struggled with this since I had the virus aged 10. It seems whenever I start vaguely approaching the weight I'd like to be my body has some sort of spectacular malfunction and I lose it all again.

Anyway....I finally showed some slight improvements and in may I started a low stress part time job - 15 hrs a week - split into three 5 hour shifts spead over the whole week.

At first it seemed ok, but before I knew it I'd called in sick three times already, my fatigue was awful, I would literally have to go straight home to bed for several hours to sleep and rest till my next shift.

Until recently, I'd started having issues with dizziness again, despite eating well and once again approaching putting enough weight on to reach my goal - yet once again, something struck and I had no appetite, felt sick a lot, had abdominal pain, and then developed intermittent low grade fevers (which is when I got signed off about 3 weeks ago), while feeling pretty horrid, as well as abdominal pain, frequent urination at times, and my periods being totally messed up -  I started bleeding at the halfway point between periods - just for 3 days, then it stopped suddenly for 24 hours and started again for a day, now, my period due date has been and gone - 10 days ago, and I've had back pain on both sides, and breast tenderness, way worse on one side - when normally my periods last a good 7 days and both breasts are tender, so this seems totally out of character for my body and out of step.

All the doc could find was a low white count (she tested it twice several days apart), particularly neutriphils, no infection in urine, blood work otherwise fine. Definitely not pregant - I have still got a libido, but no energy to act on it and my muscles aren't up to it - on a bad day I can't climb the stairs without feeling breathless and lightheaded and a bit sparkly let alone anything else.

I've been told I have IBS obviously, but that's all - I'm also under investigation for an ulcer - as I've had some stomach pain - they tried an endoscope but I panicked and am booked for ultrasound (had them before and they showed nothing), and barium swallow in December.

The doc has referred me to a general medicine doc, and now as I had my endocrinologist (whom I saw once but he said I didn't quite fit CFS to his mind though wasn't keen on the idea of me working) fax the results of the blood tests he did back in may - which showed a positive ana 1:100 - so she's referred me to a rheumatologist.

Am just going a bit mad - tonight is one of my nights where my back aches and I'm just wondering what the hell is wrong with me!!! Any answers please!

2

Well, somebody was smart, giving you that ANA test. I don't know any specifics about the numbers, but that is a blood test used for Lupus. You need to find out if the test definitely means you have Lupus, or not, and then act accordingly. Otherwise, the symptoms sound very much like ME/CFS. And, frankly, I got stressed out just reading your post! You're doing way too much, pushing youself too hard, Once you've gotten ill with ME/CFS, a normal life with normal activity/stresses is not a good thing. You need to dial it way back, and realize that what's normal for others is not advisable for you. 

3

Sounds bad. I feel for you. I am stressed out and am doing too much at the moment and feel as if I can't go on and wonder where it is all going to end. I never go to the doctors if I can help it but maybe now is the time to do so. Sounds as if you have ME. Do you have an understanding partner if so that would be good.Someone to help you through these tough times.I hope you get to the bottom of all your problems.

Alison

4

I think what most of us have experienced is that you really need to go to a specialist for these kind of issues. If you're bleeding mid-cycle, have you been to a hormone SPECIALIST (and no, I do NOT mean an endocrinologist.), preferrable one who deals in natural hormones replacement should it come to that? The test should be done with saliva. Have you checked for presence of heavy metals? Have you checked for Candida? Have you checked for Hypothyroidism... and seriously, I should think that the best thing you could do is to find a doc who specializes in the CFS/ME. That doc will surely have ideas as to what to look for. Your issues sound highly autoimmune. IBS is a catch-all condition, more that a specific condition, as I understand it. The thing is, I have found that with CFS, I need to just keep chinking away at the armour. I have a low thyroid. So I take meds. This doesn't make me feel back to normal, BUT it helps. I have heavy metals present and Candida (they usually go together). So, I work to get rid of that, and it helps a bit. I have totally messed up hormones, so I take HRT. None of it cures the CFS; all of it helps tremendously in its own way, cumulatively. Good luck. KEEP LOOKING FOR THE RIGHT DOC!!! Someone will hear you. (We all do.)

5

Thanks for your replies, I think I also forgot to mention I've had the odd finger joint randomly swell up and take about a week to go back to normal, and a few years ago I had problems with pain in one big toe for months which was so bad I even limped, they tested it and said I had early degeneration of the 1st MTP joint. They offered me a steroid injection, but I decided to live with it, but a little while later, it just stopped - despite me still doing a job where I had to walk miles a day and was wearing the same footwear, that always puzzled me am now wondering if it was similar to the finger?! Since then, it's only hurt occasionally and is a little stiff at times.

I've also got a moderate scoliosis - I suspect genetic prediscposition as my mum has one too and spending my teens curled up in an armchair feeling rubbish didn't help! I've also been told I have 'loose ligaments' and have also had pain in one knee for the last 6 months which wakes me up even at night, for no apparent reason, so am going to book a physio on monday as I've had enough of it.

This morning I've woken up dizzy and walking like a drunk, so I've gone back to bed till it passes - probably because I got taken into town yesterday to go shopping for the first time in over a month....bad me.

They don't seem too concerned about my period changes and just told me to keep a diary. I had a hysteroscopy in March to remove a non-hormonal IUD as it was making my periods unbearably painful, so they had a good check of my womb then and found nothing, so makes me think it must be my hormones going a bit nuts, as throughout all my health issues, apart from when my weight went really low, my periods have always been pretty predictable.

I've thought about getting some home tests, but don't know which ones are reliable or the docs would take their results seriously or not?! I had a hair analysis done, which was interesting, and didn't show much in the way of heavy metal toxins (as I used to have a lot of mercury fillings - only have a couple left now as had them changed to white) though I don't know how reliable it was.

My GP also said my thyroid was ok, but a few years ago - when my parents were paying - they sent me to see a private doc in london who believed in sub-clinical hypothyroidism and put me on tiny doses of thyroid meds and it did help at the time. Sadly he was £200 for an appointment, and approx £400 for tests and another £400 for all the supplements and meds he prescribed....otherwise I'd go straight back to him!

 

6

I feel for you, like Marchel32, I too thought Thyroid as I was reading. I had a few issues ending with over active Thyroid at 15 yrs old, but was not properly diagnosed until 19 when I had a Thyroidectomy, and never had normal energy since. You get to deal with one problem only for another to show it's ugly face!!  Now 72yrs had one knee replacement, waiting for other knee and hip!  Now surgeon stopped one op, due to another rash, is supposed to be Sjogrens Syndrome based. Also years ago had positive ANA, RA, my bloods are very up and down, carn't do with most RA meds.  I think Drs. Etc. are more aware of these hid'n problems, I hope your soon sorted, I feel the longer you leave it the more complicated it is to sort.The immune system seems to have a mind of it's own!!

7

Hi, I've been ill for 20 years (42 years old now). I got significantly better when my doctor diagnosed and treated problems in the digestive system (helicobacter pylori, ulcer). Drinking soda in concentration I could easily bear, seemes to help a bit also. If your doctor cannot find another root cause, cfs may be due to problems in the digestive system. I wish you complete recovery.

8

It may help if you start pacing - pushing through until you 'crash' just makes the ME progressively worse. I speak from experience.  ME/CFS is an illness you have to manage.  You can't just ignore it and hope it goes away, you have to be proactive and change your lifestyle and manage the illness properly.  

You will need to sort out your IBS and many find relief in excluding problem foods (such as wheat) you may want to check out 'leaky gut' and/or 'anti candida' diets and see if your symptoms fit.  Find ways to imrove your digestion and stomach health.  Make sure you rule out H. pylori, parasites, c-dif, etc and maybe see a professional nutritionist - one that specialises in IBS and/or ME/CFS would be especially good.  You may want to look into using organic pure coconut oil supplements.  Getting the causes of your digestive issues sorted will really help you and your immune system.

Also make sure your B12 levels have been checked.  If you have IBS you may be having difficulty digesting and absorbing vitamins & minerals and may not be producing intrinsic factor that creates B12 from your food.  It was your mention of low ferratin and other symptoms that I feel you need to confirm that your B12 has been tested.  Also magnesium can be low for people with ME. Try and get these things checked.

In the meantime learn pacing protocols and get out of that push/crash cycle.  Really try to get foods of high nutritional value and foods that really benefit your gut and avoid the main trigger foods fro IBS (such as wheat, cow dairy, sugar, high GI carbs, caffiene, etc Try to keep a food diary to pinpoint any problem foods or use a kinesiologist or some type of food intolerance testing). Look for a Low GI diet, rich in vegetables and protein with every meal - do not skip meals.  Do check out the leaky gut diets online as it could be linked to auto-immune diseases, so sorting out your stomach health could really make a difference to the rest of your health and your immune system.  I had a c-dif issue and getting that sorted with my GP and some antibiotics really made a difference for me.

Looking after yourself and making changies that improve your quality of life for your health and wellbeing is your priority right now.  

9

Yes, the gut microbiome study, currently ongoing, is where Professor Lipkin is looking for causes of ME/CFS, so he seems to think there may a link with the digestive system.

10

Funny you should mention Professor Lipkin. He is using crowd sourcing to fund his research, and I just made a contribution. If the government and private companies won't step in, we'll have to.