Any advice please 😄: Hello, New to the... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Any advice please 😄

Kate74 profile image
16 Replies

Hello, New to the site and really looking to connect with other fibro suffers. My GP hasn't anything to say about how to manage the symptoms. I was prescribed duloxitine and paracetamol. .. I am exhausted all the time, have a very sore body and so struggle as I have 3 children and a house to run. I really could do with some advice. Plus I'm getting fatter and fatter... o my days... not fun eh xx

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Kate74 profile image
Kate74
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16 Replies
lushy2001 profile image
lushy2001

Hi Kate, I’m new too! Everybody is so lovely on this site, so you’ve definitely done the right thing coming here!x x

Dinkie profile image
Dinkie

Hi Kate and welcome to our fibro folk forum. We are generally a happy friendly bunch. Feel free on here to have a rant, ask for a gentle hug, or just tell us about what is happening in your life. No question to silly to ask either as you will probably find someone else thinks it or has asked it or suffered the same way. Regarding how to deal with fibro. Well that's a real poser of a question. Everyones story and symptoms are different and what works for you may not work for others. When I was diagnosed I was given a piece of paper with fibromyalgia written on it and told to go research it. That was it, I sat in the hospital car park and cried I had no idea what it was or meant. The lovely folk on here took me under their wing and I have plagued them ever since :) Learning to say no is important as is learning that on good days you can't go mad and do everything because the next day the fibro sprite will want his payback.

For me, cooking from scratch in batches works well, I dont have any processed foods or refined sugars. I use heat pads, chiropractor and hypnotherapy as I can't tolerate prescription drugs and the old faithful epsom salt baths to help with the muscle problems.

I too put on weight and did nothing about it. You have to be in the right frame of mind and with everything going on in your life at the moment now is probably not the time to think about dieting. I joined slimming world when I was in the right place and time to do it and lost 3.5 stone so it can be done just a case of finding the right time. Chin up - there will be someone else along soon to give their view and advice too.

Ramjets profile image
Ramjets

Hi Kate, I think many of us have been left to get on with things and find out for ourselves how to manage this condition. However I am sure you will get lots of advice to help with this from our friendly members. There is also plenty of useful information and links on our main site so you may like to take a look at this:

fmauk.org/

Also I notice you haven’t locked your post. You don't have to do this but you are likely to receive more replies if you do as many of our members are not keen on responding to unlocked ones, as they can be accessed by people outside the community . Instructions on how to do this can be found on the link below but if you get stuck, please don’t hesitate to ask for help.

healthunlocked.com/fibromya...

So welcome to the forum my love, I look forward to seeing you around. Take care.x

Kate74 profile image
Kate74 in reply to Ramjets

Thank you xx

Miss68 profile image
Miss68

Hi Hun, welcome to our lovely, friendly site. I’m currently taking duloxetine too, however, I take it for a benign spinal tumour too. When I was on the higher dose of it it gave me the most awful side effects. I wanted to sleep for forever on it, it made me sick etc too. My gp lowered the dose to 30mgs and the symptoms were still there but much duller so I felt I could live a bit better. I was put on them for neuropathic pain and it definitely helped take the edge off the pain. Take care lovely, get some rest, don’t overdo things and gentle hugs to you xx🤗🤗

JacquiRo profile image
JacquiRo

Welcome and healing hugs xx

Kate74 profile image
Kate74 in reply to JacquiRo

Xxxx

robpw profile image
robpw

I feel exhausted and it’s a never ending cycle but then I got diagnosed with chronic fatigue after two bouts of glandular fever - so I think that coupled with the fibromyalgia and the back problems my body is in a never ending flux of exhaustion - I have to learn to not overdo things which is tough because I’m 35 and well should be out earning etc I feel like I want to be active and day time tv drives me round the bend and there are only so many box sets. So I push and push then I get ill and I’m on my back or my legs swell and im stuck again. Weight for me is an issue - I do find it’s difficult to shift but as someone else suggested slimming world works for me and I also find it helps with preventing stomach acid :) I agree with others that symptoms and severity differ for each person but I think we learn to cope somewhat.

Have you checked any blood tests your dr has done ? Often a dr will say they are normal when you are right at the bottom of a normal range. If you've had blood tests in the last few months, ask for a copy of your results. Your result will be a figure, with the normal range shown in brackets after it.

Low B12, folate and /or iron can cause health problems and a problematic thyroid can cause weight gain. My GP said my tests were normal when in fact I had low B12. A lot if my symptoms improved when I treated myself with B12 (as the dr wouldn't)

robpw profile image
robpw in reply to

My blood tests always show raised levels - they do new tests and then don’t contact me again so I don’t know

in reply to robpw

It will depend on which are raised. With some high levels are good, whereas with others ( thyroid hormones) it could indicate an imbalance.

Maybe get a copy if your blood results, take them along to GP appointment and ask dr to explain all.

Rosey2012 profile image
Rosey2012

Hi Kate I am new here too.

I was diagnosed back in 2012 although now I realise I had this for a long time prior to that. My best advice would be 'don't give up. I am a part time psychotherapist & a single parent to two older children and understand how difficult it can be. My Doctor referred me to a Occupational therapist who helped me find ways to get around more easily as I struggled with everything physical. I have a lot of medication but it has been trial and error but worth it in the end. So dont give up. Even though the exhaustion makes that toughat times. Be kind to yourself where you can.

I also went to therapy but I still hid away from the world as much as I could as I was just so tired. Only now I feel able to join this group. So already you've done something massive to help you along your journey. We are all different but also all have the job of navigating our condition. I wish you all the very best and am looking forward to being a part of this community too. Jo x

Ramjets profile image
Ramjets in reply to Rosey2012

Hi Jo, welcome you to our friendly forum. I'm so sorry you have fibro but glad you have found your way to us. I was initially hesitant about joining the group but I am so glad I did as it has provided me with invaluable help and support, I am sure you will have a lot to offer as well as gain from being a member. In my reply to Kate, I provided some links to our main site and on how to lock posts, but I have added them here as well as you may also find them useful. Take care and I look forward to seeing you around. x

fmauk.org/

healthunlocked.com/fibromya...

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Afternoon I see you have already had some lovely replies from our members with good advice , yes it is very hard 3 children and housework a full time job in it's self, I found last week we had our grandchildren 6 out of 7 days and this week I'm struggling I'm having to stop for many breaks as it's had a knock on effect this week. Can you have little rests periods when they are at school, what I've done today is written what really needs to be done the most today so done the veggies lve put the washing out , little ironing stopping for that nice cup of tea in between , although I'd like to complete my whole list I know it would put me back for tomorrow so ticking some boxes and what is not desperate will get put on to Wednesday . Have you tried the Epsom salts in your bath ?? I find that really helps . So welcome will look forward to seeing you around xxxx

Kate74 profile image
Kate74

Wow thankyou so much for the replys. Horrible feeling on my own so it's really helped lift my spirits. Xx

shazmill profile image
shazmill

Hi kate welcome. i have suffered from fibro for12 years. Have you tried pregabalin? It helped for a while. I also tried morphine patches which were really good.

2 years ago my doctor refered me to local Lesuire centre. I tried piliaties and yoga. It is gentle but effective. I dont know how i would have coped without it. I have also now trained as a Tiachi instructor. Ok there are many days when i can't even get out of bed. The pain was so bad i thought I might die.

I find on darkest days i come on here. The people are so lovely genuine and kind.

Your at the start of your journey but your not walking alone. If you need anymore info on what i have said please feel free to ask away.

If you get no joy seeing your doctor see another in the practice. If you are not taken seriously move to another practice.

I know its alot but only when you find the right doctor things may get better. I wish you well

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