Terrified

[nicole1989]

Hi to be honest I don't know where to start , I'm 25 and just been diagnosed with M.E after 6 months of constant tests , and these last 6 months have been the scariest 6 months of my life , from being a healthy fit mum of 2 , to hardly being able to walk , not being able to pick up my girls , sleeping all the time and still not having the energy to wash up , and losing my job , I feel like the whole word is falling down around me , and I don't know what to do , I don't really have my family around to help and my partner really doesn't understand , but than neither do I , please can someone help

[Hidden]

I feel your pain, I have gone from working full time, studying a degree at home while maintaining an active family life playing with kids, doing my share of housework and my hobbies to sitting around dozing.

I am getting near the point where work are going to let me go, (I know I am no where near capable of returning in the near to distant future so will be giving up a career that I loved of 20 years) the degree which I was nearly finished has had to stop and I feel crap all the time. I now am experiencing a lot of anxiety and a real inability to do much without making things so much worse. I am like a weasel at home flying off the handle and hating myself for it.

The only thing I can tell you is nearly two years in on this things are better, (now that I don't have the stress mentally or physically of work), although not good. People do get better. Have you looked at pacing? It made a big difference for me. I saw a Dr William Weir from Harley street and he advised:

1) Gluten and dairy free diet - for me it stopped a load of pain I had in a couple of days and I recommend it to anyone not just those with ME.

2) Vitamin D supplements - people with ME have low vit D and this can cause confusion and depression.

3) Omega 3 supplements - can't remember why but I take them because he told me to!

4) Meditate twice daily, (he favours Transcendental Meditation but any for will do) this helps with the associated anxiety and low mood and can help replenish the body.

I can't think if he told me any others at the moment the ME has not only stopped me physically but it has fried my head and my concentration and memory are shot to hell.

You need a support network. I'm very lucky as my wife is great, I do what I can and she has picked up the slack. Get your other half to read up, get him to post any questions on here and we will do our best to let him know how debilitating and horrible this is.

Get your other half to read this with you:

investinme.org/Documents/PD...

It should answer most questions. And see below on pacing:

actionforme.org.uk/Resource...

Good luck and feel free to ask for support on here you are not alone we are here to help.

[sulamaye]

I would add that it is understandable that you are scared, but it is important that you try not to be because it will raise all your stress hormones and they are implicated in most m.e even though the NHS doesn't do the subtle kind of tests that pick this up. Have you any other symptoms apart from being tired, leaden exhausted? Please describe them to me if you have.

[nicole1989 in reply to sulamaye]

We're do I start with symptoms , I'm constantly tired ,

muscular pain like really bad cramping and my arms hands and legs go completely numb, joint pain are really bad I can't walk for more than a couple of min before they give way , I get severe headaches

My memory and concentration is really bad ,

Constantly have a sore throat,

Been suffering with depression and irritability.

Get really dizzy if stood still to long ,have problems with balance , difficulty controlling body temperature when I get cold if takes me along time to warm up my hands and feet go like ice.

[sulamaye in reply to nicole1989]

Ok all those symptoms are also symptoms of hypothyroidism. Have you had blood tests for that? If so they probably only tested your tsh. I have been hypo for over twenty years and although my m.e is sadly more complicated than simply badly treated hypothyroidism, there are many people diagnosed with m.e who go on to discover that because of the NHS s very narrow range of diagnosing hypothyroidism, that when they pay for further tests, or gather more knowledge via thyroid UK s health unlocked group and end up getting the treatment they need, whether via an endocrinologist, private Dr or self medicating that they actually don't have m.e.

I am not saying this is the case for you, but your symptoms, esp the coldness, point toward it as possible. If you have had it tested get a print out of the results from your GP, u have a legal right to them, join the thyroid group here too and post the results with the ranges and ask for feedback. The administrators are very knowledgeable.

Don't accept the so called normal interpretation your GP may have given your bloods. It is a complicated disease and I have learned loads more than I knew before and discovered that it is part of the puzzle of my m.e, even if not the full picture, even when I appeared very medicated. M.e is pretty untreatable, but hypothyroidism is not, so it's really important you explore it fully. Sometimes it's just that people are on the wrong thyroid meds and their bodies don't like the generic muck the NHS prescribes.

I hope this helps.

[sulamaye in reply to nicole1989]

Ps I have just won a tribunal for personal independence payments. Go to the cab or your local disability rights organisation and get them to apply for you, it is not means tested and you could use the money to buy some help. Waited 4 years before I decided to apply because I thought I would get better, that's about £20,000 I missed out on and I was much iller at the beginning.

[nicole1989 in reply to sulamaye]

I have had so many bloods and scans done testing everything , I have to see my gp next week so will speak to them then

[sulamaye in reply to nicole1989]

Yes, most of us do, I was tested for cushings, addisons, ms etc Don't bother discussing possible thyroid problems with your GP they know nothing and will just undermine you. Just ask for a print out of your thyroid function tests with ranges. I now know more than my endocrinologist, let alone my GP, about the complex subtleties of hypothyroidism. Most endos have never heard of reverse T3 let alone GP's, for example.

[DawnieA in reply to sulamaye]

Hi, I'm interested that you got PIP. I am also hypo, have been for 20 years, and was diagnosed ME last year, although I think I've had it longer. I'm at my wits end, gonna lose my job, had loads of time off work, so I no longer get sick pay. I'm a single mum, so have no other income. The tiredness is a killer and I just can't function some days. Daft question, but how bad are you with your illnesses. I'm wondering if it's worth applying, but heard so many people knocked back x

[sulamaye in reply to DawnieA]

I spend 50% of the day in bed, I am up 1.5 hrs then bed1.5 hrs, I am housebound, only go out for Drs etc driven by my partner. But don't let that put you off! The CAB supported a woman who went to tribunal the week before I did and she got the standard rate for both mobility and care and she teaches 3 days a week!

That's the kind of ill health I dream of. But you must get CAB or disability rights to do your application, be prepared to have the dwp award you zero points and ignore all their own criteria and then cope with the stress of going to tribunal. It has been hard, but with £3,000 of back pay coming to me it now feels worth it. I know people less I'll than me who were given it without quibble, so I think it's luck whether these called health professional understands or not. Plus I think if a dis ab rights organisation supports u from the beginning you have more chance of being awarded straight off. 50% of people who go to tribunal win and that percentage rises significantly if they are supported by cab etc.

There is an m.e benefits FB page too that helped. But start by finding an organisation near you and get them to do your form! Be brave and go for it, we deserve this help and the key info is that you are meant to be able to do something repeatedly, safely and timely, that's what's so hard to get them to implement. The fact that we can often make ourselves do things, but that doing so makes us I'll, raises symptoms. Let me know how you get on.

[sulamaye in reply to DawnieA]

Ps I assume you are part of thyroid UK on health unlocked and have tried the obvious like natural dessicated thyroid or t3 only?

[DawnieA in reply to sulamaye]

Hi, thanks for reply. Yeah Im on the FB page for ME benefits and part of Thyroid UK. I've tried T3 and NDT, felt worse on NDT, so back on Levo. My bloods are erratic at the mo, TSH went up to 82.9 then dropped to 0.13. They have no idea what's going on. My endo sent me to Christies in Manchester to the specialist endocrine unit as he didn't know what to do with me. Been checked for Addison's and cushings etc x

[sulamaye in reply to DawnieA]

Have you gone t3 only, no t4? This suits me best, but I could only get it up high enough before BP etc rose once I was self medicating with hydrocortisone because although I have plenty of cortisol in blood and was fine on a SST for addisons when I had the saliva stress test bio available was on the floor! NHS ignores that, thou it seems obvious to me that cortisol is remaining bound to protein carrier and NHS tests do not test for what is available.

[DawnieA in reply to sulamaye]

When I tried T3, it was with Levo. 20mg of T3 and 100 Levo. I've tried to get them to do more cortisol tests as when I've been tested, it was 93 in the am which is way too low. I'm awful in the morning, but tend to liven up at night. The NHS don't offer the saliva test tho. They e done a 48 hour urine collection, which said my cortisol was ok, but my argument is that only shows cortisol over a period of time. it's like fighting a battle x

[sulamaye in reply to DawnieA]

I know, I gave up expecting anything from them when my previous GP took my 20mcg t3 away and slashed my Levo by 50 mcg because my tsh was suppressed. Had been for 13 yrs! With in a month or so I'd crashed back to where I was when I first hit the wall. I do have an ok GP now and endo who is prescribing t3 only for me, but only after I'd gone off piste and put myself on t3 only. I paid for saliva and a reverse t3 test myself. I'd do anything to recover and if it means buying my own meds or paying tests and ignoring the NHS I will. I've lost nearly half my daughter's life to this illness.

[sulamaye in reply to DawnieA]

The thing is that if your creating too much rt3 taking Levo and t3 together won't eliminate the problem. I felt worse on NDT too. I think I'm t4 resistant more or less. Stress, I don't mean emotional, ups rt3 production.

[DawnieA in reply to sulamaye]

My endo has said if my bloods continue to be erratic, they will do a thyroid absorption test. All this is sooo complicated x

[ME65]

Hi Nicole,

So sorry to hear that you have been diagnosed with this horrible illness. It is frightening and you just get left to get on with it without any real support from the NHS. Is there an ME/CFS clinic in your area? These are listed on the Action for ME website (raffs has given you a link for this site). It can be helpful to get an appointment with a clinic where they can help you to get your head around it all. You would need a referral from your GP and if you are too ill to travel you can ask for a home visit.

All of raffs advice is really good and worth following up. The main management strategy is pacing. That means living within your energy limits, however limiting and frustrating that is. If putting washing in the machine leaves you exhausted then it's too much for you right now. If you can give into the symptoms now it will pay dividends in the long run. Managed well ME can improve and you can get your life back. I hope your husband will be able to get his head round it too so he can be the support you so badly need right now. Do you have friends who would help out on a regular basis? If not consider asking Social Services for an assessment and see if they will help. Years ago I used to employ my own home-help once a week to clean the house through and do shopping. At least there is online shopping now. But if someone came in and did the cleaning, washing and ironing that would help alot and your husband may not feel so hard-done-by. Don't feel guilty about this, you are very ill right now and need to put your needs first so you can improve and hopefully fully recover.

Lots of love xx