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Just diagnosed

catleigh profile image
13 Replies

I have just been diagnosed with Fibro after months of pain and fatigue etc. I have been reading up on the illness but feel swamped with info. I also have an underactive thyroid which I am taking medication for.

Where do I start? How can I help myself - ie are there any vitamins and minerals I can take to help? My doctor has said there is no treatment but how do you manage the pain?

I have to work full time and I am really struggling to get through the week. I have slept allot of the weekend as usual and am sure people think I am just lazy and that its all in my head.

I would really appreciate any advice - thank you :)

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catleigh profile image
catleigh
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13 Replies

I think your GP is being a bit unhelpful . There's no cure for Fibro but there are treatments . Some more helpful than others . Have you seen a specialist and been diagnosed through him or is this a diagnosis by your GP ?

Fibro has lots of different elements to it and so it can be difficult to find something, or many somethings , to help with each symptom, but to say there is no treatment is a bit wrong.

Is there a more sympathetic doc at your GP practice , because it sounds to me like the doc you've seen isn't up to date on the illness.

Hugs

xx

catleigh profile image
catleigh

Thank you very much for the help ladies - I really appreciate it.

The diagnosis has been made by my GP and he is not referring me to a specialist. I experience allot of the pain in my chest so he has scheduled an ECG and chest xray to make sure my heart is ok but he is certain about the Fybro as I have had all the symptoms for months.

I know this will sound stupid but I feel weak for asking for pain relief. I have tried paracetamol and Ibuprofen but they dont touch the pain at all. I told my GP this but he did not offer any pain relief.

I am already on anti depressants (Sertraline and Aripriprazole).

I barely get through the week at the moment. I work full time and by the time I come home I am ready for bed (pathetic I know) and I sleep half the weekend away but never feel refreshed.

Its so hard to explain to people :(

susie59 profile image
susie59 in reply tocatleigh

i think this is a lot of the problem, people not being to understand how we feel ,the pain and the isolatation we feel. dont call yourself pathetic.

you are not at all pathetic! Please dont be feeling weak for needing help with the pain.I sometimes think we are too strong for our own good sometimes, sending loads of love and hugs, xxxx

jazher profile image
jazher

Hi catleigh, its lovely to meet you.

You shoul ask for pain relief as there are some meds out there will help so much but not take it away fully.

Pacing is the key for fatigue, it is so hard but you need to listen to your body, i dont work nomore but after tea time i count down every second so i can go to bed.

If your doctor will not help with trying out new meds you need to change your gp.

Take care, hugs, kel xxx

Christeen profile image
Christeen

Hi, I myself have recently been diagnosed with Fybromalagia, after 3 years of been treated for Lupus which I no longer have apparently??? My GP has been great and has really started to listen, in the past he has always come across as not interested. Anyway when I was discharged from the Rhemy earlier this year ,I was referred to Pain Management and now seeing Specialist Nurse. Lynda is fab, really listens. I'm trying a tens machine at the moment and also attending aqua aerobics on a Wednesday evening. I have an appointment with a pharmacist, I have only been taking paracetamol, I was told I was not taking correctly. I was only taking them when I needed too, they should take regular. Ask for a referral to Pain Management.

I work full time, but feeling really drained trying to juggle work, home, every day stresses as well as doing some study's. I can sleep for the nation but never feel recharged, they should make sleeping an Olympic sport, I'm sure I could be in the running for gold or silver with a WR. The fatigue and memory problems are becoming my main issues and they are really starting to take there toll on me, physically and emotionally.

I found the following piece of information that might be worth people asking their health professionals about:

Ribose effects for Fibromyalgia and Muscle Health

There is no known reason for people developing Fibromyalgia however we do know that people who have this condition also have low ATP levels and a reduced capacity to produce ATP in their muscles. Ribose fuels ATP synthesis which reduces muscle pain and enhances the quality of life for those suffering with fibromyalgia and/or chronic fatigue.

Dosage: 5 grams with each meal for the first 2 weeks. Drop down to 5 grams twice a day w/meal depending on pain.

Need to take at least 10 days to feel affect.

**Ribose is also known to alleviate altitude sickness and PMS cramping.

Hope this helps and take care

Christeen

Hi catleigh ,

Don't ever feel bad for asking your GP ( or anyone else for that matter ) for help, it's what they are paid for.

Not all GP's are Fibro friendly and sometimes that means a change of GP, either within the surgery or even moving surgeries.

Sadly it's often the case that he who shouts loudest gets the best results , so sometimes you really do have to take them to task and insist they do something. If your GP is unwilling to provide pain relief then ask him to refer you to someone who has some specialist knowledge, normally a rheumotologist . Ask about referral to a pain clinic too. I'm afraid it is sometimes a case of keep going back until something is done .

I think because GP's know Fibro isn't life threatening some of them have a tendency to dismiss it as a minor ailment and some just don't have enough knowledge or experience of the condition to be of much use. You can help to change that by showing him this site , providing info on the condition yourself and making sure your GP knows what treatments are available.

Look on it as charity work... you may be helping others with the condition who come after you :)

xx

catleigh profile image
catleigh

Thank you all ever so much - I cant tell you how much it means to have found somewhere where people understand.

I am seeing my GP on Friday and will talk to him about pain relief etc. If he isnt helpful I will do as you suggest and change GP.

Thanks again for taking the time to respond to me - I really appreciate it :)

hal123 profile image
hal123

i have just been diagnosed with fibamalgio after been in pain 4yr also got ostioarthariters in my knees i feel so ill al the time i have been geting a lot of spazams in my back were it makes me jump and in so much pain is this part of fibamaligo or have i done my back in

lollypop profile image
lollypop

hi hal,iv been dignosed two weeks having fb,i also have spine problems but iv been having spasams&twiching,jumping in stomach&spine.im new on amitriptyln &have noticed they are lesser.reading lots at the moment everyone is different but some same!i too have osteoathtritis,it seems lots do with fb.im finding this group so helpfull&hope you do too!

hal123 profile image
hal123

av got to pick my amitriptyln tablets up tmoz not started them yt just been diagnosed are the tablets good i have 3 kids find it so difficult

jazher profile image
jazher in reply tohal123

Hi there hal, i am sorry you have been dx with fibro.

I have three kids too and i have been taking amitriptlyn at night to help me sleep for about three years. It has been wonderful for me and i still hear the kids at night if the wake.

It will make you groggy in the morning for a while, but i would try and keep to it as it does settle down in most people.

Good luck with them, oh and take it twelve hours before you need to get up, so if you need to get up at 7 then take about 7 at night if you can.

hugs, kel xxx

hal123 profile image
hal123

thanks for advice lollypop

hi a very warm welcome to you and hope to caht again love to you diddle x

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