Hello I am new to this site, I am a mum with three disabled children, I have fybro and ME

[Jayne68]

My dr is not helpful, refuses to send me to rhuematology, my life is shrinking, struggling bit time! No-one around me understands all they want is me to keep going .....

[Hidden]

Change gps or a least see anther one in your practice ... There are lots of things your GP can do for you with fibro apart from give or not in some cases medication... I have been reffered to a rheumy .well 3 as the first two retired after seeing me ....third one was great...helped a lot .. I also got referred to pain clinic where I get injections every three months and when my autistic son was younger I also got councelling . Please don't give in I understand life isn't easy so we need the best support and help we can get so please see another GP.. Write a list of things that are a priority and hand it over to the GP

VG xx

[Jayne68 in reply to Hidden]

Thank you for your comments, actually my three kids are autistic and I have had to fight for everything for them. Will have to try to dig deep and get some energy to fight my corner too.

[ladymoth]

You certainly have your hands full, Jayne, and I'm sure there is some help available for you. I can't add much to what VG has said - you really do need to go back and put some pressure on your GP.

Moffy x

[Jayne68 in reply to ladymoth]

Thank you for taking the time to read my comments, I will try to put pressure on a GP.

[Jayne68 in reply to ladymoth]

Thank you for taking the time to read my comments, I will try to put pressure on a GP.

[phlebo123]

Hi Jayne and welcome Maybe arrange to speak to your practice manager. Either on the phone or a visit to the surgery and ask if they can arrange for you to have an appointment with a different GP and if not explain that your current GP is not being helpful. (I would suggest that you write down on paper all the things you want to ask beforehand) Also maybe you have a member of your family or friend who can go with you to see the GP to support you. The doctor might then be more willing to agree to send you to a consultant. Do you have any help with your children? Do you have family or friends nearby who can help with your children for a few days each week so that the pressure is taken off you? Your family are so used to you doing everything ALL the time that they now expect it from you so try and make small changes by getting others involved and when the "going gets tough" don't be afraid to ask for help. And don't forget "we" all understand how you are feeling and ask any questions as there is always someone who can help answer them. Take care and let us know how you get on xx

[Jayne68]

Hi thank you for the welcome. I think what has complicated matters is that a couple of years ago I moved house and was forced to change practice ( 3 mile radius issue). I had got a good relationship with my previous Drs having been at the practice for over 40 years! I knew who to go to for what. Since moving into the new practice, see a different Dr everytime, they are a teaching practice so always new Drs, and I do not think much to any I have seen. Only have my mum and she is in her 70's so reluctant to keep asking her for help, my dad has failing old age related problems and feel guilty as I should be helping them more, not the other way around!! I ask my husband for help but know he does not understand and thinks I am exaggerating. I will go back to my Drs and ask for a referral to someone who specialises in ME/ fybro, if there is anyone! Thank you for your kind comments and support. Nice to speak to some people who understand xx

[onhereagain]

Hi Change your Dr look around and ask people to recommend or not I had a bad Dr then a good Dr after moving then moved aain and ended up with another useless practice.a few months ago I changed surgery and have not looked back. Do not let them grind you down. I think your Dr is putting it all down to stress and lets be honest it could be looking after one daughter with aspergwers is bad enough but 3 ASD children I feel for you.

Has the Dr checked for underactive Thyroid & Vitamin D & Vitamin B12, Ferrotin etc if not demand these test as I also suffer from under active Thyroid and Vitamin D deficiency and both also give Fibro like symptoms.

[Jayne68 in reply to onhereagain]

Glad you have managed to find a good doctors surgery, I am hampered with this 3 mile radius thing. I have heard about certain good surgeries, but as I am out of their radius they wont take me. I will keep trying though. I have had my thyroid checked but not vitamin d, or b12. Thank you for your kind suggestions and sympathy x

[Hidden]

Hiya Jayne, I have Fibro and ME. I have been refered to ME clinic, ive not had my apt through yet so i cant tell you what to expect!! but the GP who refered me said they educate you about the condition and learn you how to manage it. I have probs getting our gps to listen to me, the lovely doctor that refered me has left the practise now so im gutted.

Our surgery can not hang on to the good DR's for longer than 12 months, they leave pretty much as soon as you get used to them.

All i can say about ME is, dont over do things but with children to look after i can only imagine how hard it is for you.

Takecare

Good Luck xx

[Jayne68]

Thank you Eversohappy, I will mention a clinic to my GP, or at least the one I get to see next time. xx

[Jayne68]

Thank you Eversohappy, I will mention a clinic to my GP, or at least the one I get to see next time. xx

[Cat53]

Hi Jayne, re your children see if you can find a free children's Bowen clinic. Bowen may be useful in helping with behavioural issues. Also check out Jordoneyes in Ayr Scotlad. He helps autistic children with visual problems. You can see some of his results on you tube. I feel with three disabled children you have been way down on your list of priorities and your body is crying halt. Bowen may help you too. If you live near Durham or Newcastle there is a new concept in healthcare called the Northern Integrated Health Practice (NIHP). it's the way forward and might be ideal for you. I hope you get the help you need soon.

[Jayne68]

Thank you Cat53 I have tried Bowen for my kids ( went to a clinic that offered free treatments) it really helped my kids, but the journey was quite long and one of my kids found the sensory overload of being touched difficult, so in the end we stopped. I tried Bowen and enjoyed it but needed regualar treatments and to be honest, I cant really afford the constant outlay. I live in the Northants area and all services are being cut back. I appreciate your suggestions.

[LindseyMid]

Hi Jayne

Are you getting help as a carer or as a disabled parent? There are specialist organisations out there for carers, parent carers and disabled parents, who may also be able to help.

[Jayne68]

No have been told that I will have to be in a terrible situation to get any help as a carer of disabled kids and being ill myself. I dont get any help at all, except my lovely mum, who has her own problems.