Anyone out there like me?

Kim -- I'm like you only because I've been a caregiver/carer for a family member; once was for my mother, the other three for formerly healthy husbands who later died. In recent years, my 59 year old daughter has twice had major surgery for melanoma but is otherwise healthy and fit. I know what the disease MS is, but am not familiar with ME. Can you tell us about it? I imagine your hopes and dreams for your daughter are on hold at this time. Do you have anyone else sharing your caring duties? I' sure you will hear from others who are caring for adult children. Jaykay.

The body usually gives us pain to tell us something and just suppressing it with more toxic drugs may not be the best way.

If I were you I would try complementary therapies, although your daughter would have to agree to it. I would ask locally for experienced, well qualified and recommended people. Was your daughter a positive person before all this pain and does she know what triggered it all?

I am speaking from experience and I know how the body wants to heal, but we need to be connected to it first to know what to do and I was helped by some brilliant complementary practitioners who didn't tell me it was all in my mind or I was depressed like GP's and other doctors told me.

Instead, they knew of tests to have done that revealed a serious fungal infection, a lack of good gut bacteria, a bacterial infection, high levels of Calprotectin and Eosinophyll protein X indicating inflammatory bowel disease, allergies and more - few of which doctors diagnosed or knew how to test to diagnose except with traumatic, toxic and invasive tests that damage a sick body further.

I was 5stone 10lb and near to death, but these brilliant people worked with me including doctors at BHH which was on the national health then, but no longer is, sadly, because the profit is in drugs not homeopathy.

I eat only when hungry, exercise when I need to, rest when I need to, which is usually at night now and not in the day as I once needed to. I weigh a healthy 8 stone and I know I would not be here now if it wasn't for those knowledgeable and professional complementary practitioners who worked with me and showed me the way back to health.

I had all the symptoms of Fibromyalgia, ME, etc. I still have to be careful, but I am so much better than I was when being treated the conventional way.

Hi,

I had CFS but luckily it never developed into ME. I feel for both of you. I ended up back at work but now I am caring for my mother in end stage Alzheimer's. I also cared for my Dad when he was going through a very difficult and painful time. I know what it is like to hear someone calling out in pain in the middle of the night or day and not be able to help them. Words are inadequate. I really do believe that there are answers to these illnesses - sometimes we may not find that answer but I will keep looking. If it hasn't been done - a good place to start is a hair analysis. This might help to see how her body chemistry is going - her minerals and if they are correctly balanced. It also tells if there are any toxic metals. Both you and your daughter need friends around. Are you getting any outside help for respite or to clean the house etc? This is hopefully available to you. I wish you and your daughter a better and more hopeful 2018.

Hi Again!

I didn't see Cann's reply until after I had posted. Definitely a winner there with some great ideas.

Hope things begin to look up!

I would get in touch with the 25% M.E Group or Invest in M.E as there are lots of people in similar situations as yourself.

I look after my husband as we both have M.E - it's how we met 20 years ago - although we aren't bedbound fortunately.

Your daughter needs blood tests for thyroid, vitamin D, B12, Ferritin to check for other things alongside the M.E.

Karen

Has she gone gluten free? Glad your doctor is being supportive as well as the council. That is rare.

Karen

That is often the way, I'm afraid.

Karen

Hello Kim-007-mathews

My only child, my daughter was eventually diagnosed with Chronic Fatigue Syndrome over six years ago and since then she has been almost fully bed-bound. She contracted Swine Flue and never really regained her health, her immune system was obviously compromised as she caught every virus going and you could see her slowly deteriorating.

She had a stressful job with the Probation Service. She was eventually dismissed and since then has spent nearly all her time in bed. Initally we requested blood tests from her GP which showed everything was "within the normal range" (where have we heard that statement before) - except her iron levels were low, she takes iron tablets every day, and hasn't see her GP for about 5 years.

At the beginning of last year my daughter was clearly deteriorating with even worse unbelievable aching and pain and terrible tiredness. I was given advice by a retired GP to have saliva tests done by Blue Horizon Laboratories which showed her cortisol levels were very very low, in fact the Retired GP said she had Addison's Disease. She was 39 last September.

I am sure you are like me, It is devastating to see your child's youth pass them by

I too was deteriorating with the same symptoms (I thought it was just stress and overwork looking after her) and had the same test done, my cortisol levels were almost flat lining. My GP and endocrinologists would not accept the laboratory results, and since then, with advice I have had to source on line either Prednisolone or Hydrocortisone for both of us (daughter would not make an appointment with her GP, as she didn't want the terrible stress I went through). It is known that having thyroid problems and cortisol problems often go hand in hand, but again her NHS Thyroid test came back "within normal range."

However it was a relief in one respect that we knew what was wrong with us, bad news Addison's Disease can be life threatening, and the only back-up for us if we collapsed would be the rubber medical bracelet that I bought for both of us that states we are "Steroid Dependent/Adrenenal insufficiency."

It is very hard work looking after her, housework, shopping, washing ironing, and she lives quite a distance from me, so my heart goes out to you, I am sure you don't need to be told that life is not easy being a full-time carer, I am now 71 and it is taking its toll on me. I was told that I may have passed Addison's on to my daughter. We have both put weight on with this steroid, I was so ignorant I didn't realise it was a hormone. This hormone is taken in small doeses 3 times a day and it has helped me, but I was devastated when it didn't help my daughter in the same way. She said it had helped a little but not enough. I still get tired but I am 'old' and feel I am worked to death but there is no alternative. My husband was a good help at one time but we are waiting for an appointment for him to be seen at a memory clinic, life doesn't get any easier does it?