Looking for advice regarding successf... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Looking for advice regarding successful medication.

Leeniebops profile image
7 Replies

Hi. I was diagnosed early last year with fibromyalgia and joint hypermobility disease. I suffer badly at only 26 years old I struggle with bathing, walking, sitting and standing... eating... sleeping... ect. I've been plagued with crippling fatigue, memory problems, anxiety and depression for years and years since I was a pre-teen. 

I have carers twice a day to help me out as my two children are only small.

How do you parents cope with bad days and the guilt of being ill when you should be doing fun things like exploring outside or baking or getting creative?

I've had issues with my Dr in that I have a hard time getting them to understand or sympathise with the situation. They refuse to put me on repeats for tramodol despite being advised to by my consultant. I struggle to get tablets to aid in getting me off to and staying asleep... very rarely I am prescribed zimovane 3.5mg which does help but only if I am on it just a couple of days... any more and the dosage starts creeping up. It's taken a year and a half and I've still not been seen by a psychiatrist regarding the  (crippling) anxiety n depression or other mental disorders to discuss ways to treat that...

I am currently on Pregabalin 300mg twice a day, vitamin D, the mini contraceptive pill, omeprazol and the occasional nap rouen which I avoid as they do upset my poor tummy.

I struggle to eat everyday, which doesn't help at all. It's not as simple as shoving food in my mouth any more. 

I DO still walk daily for at least 15 minutes unless my joints are subluxing too much.

I rarely sleep more than two hours before waking again.

I have tried SO many non-prescription ways of treating and battling and accepting my body for all its wrongs...

Can anyone suggest a medical combination that has worked wonderfully for them? I'm fed up to the back teeth with struggling on every darned day and night...

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7 Replies
BlueMermaid3 profile image
BlueMermaid3

Hi there 

I am so sorry you are struggling so badly. 

I have had Fibro plus GAD (Generalised Anxiety Disorder) Hypermobility depression etc for 34 years. 

I have two children and am 54. 

First off see if there is a Homestart in your area. It's where a volunteer can come and help you for a couple of hours per week. 

Secondly get in touch with MIND mind.org, they are a fantastic organisation who can offer you one to one counselling, courses, and your own Project Worker who you can contact in an emergency. 

If you'd like to know anymore about MIND let me know. 

Thirdly, either change your GP or change your surgery. You need a doctor that is going to look after and believe in you. 

Taking someone with you to doctors appointments helps enormously. Ask to be referred to a Pain Clininc and a Pain Management Clinic.

I am not medically trained and am uncomfortable recommending medication to you as it could potentially make you very ill, as we are all so different. I will just say that Pregabalin (Lyrica) and Gabapentin are often used successfully for Fibro but have the side effect of weight gain. It is usually one or the other, not both.

I would also speak to your GP about whether he thinks Amitryptyline may help you. This medication helps with sleep, low mood and pain. It can make you feel a bit groggy the next day, so it's best to take it around 6pm. 

If you want to ask me anything about the above please do. I have direct experience with everything I have spoken about but obviously am not a doctor, just a fellow sufferer. 

DONT feel guilty about your children. They have you. That's all they need. They can colour, watch films, etc whilst you rest. I can assure you that they'll be ok. As parents we want only the best for our children and it sounds to me that is what you are giving them. The best you can. 

Please be kind to yourself. I can't recommend MIND strongly enough. 

Wishing you less pain and more peace

Lu x

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peck profile image
peck in reply to BlueMermaid3

Good advice Lu.Your always so good with helping others.your friend, Peck❤

BlueMermaid3 profile image
BlueMermaid3 in reply to peck

Thank you Peck xx

rosewine profile image
rosewine

So sorry to read your post it must be very difficult to feel so ill and be trying to bring up two young children.  BlueMermaid3   has given you some excellent advice.

It is difficult for any of us to comment on medication combinations as what suits one won't suit another.  Unfortunately Tramadol since June 2014 has been classed as a Category 3 drug and can no longer be put on a repeat prescription form as they are only allowed to prescribe enough tablets to last you one month at any one time.  I believe the prescriptions are supposed to be handwritten as well.  This has all come about as the minority have abused them.

I emphathise with the lack of help with your mental health as my OH suffers with anxiety and depression. and the lack of funding for this area of the NHS provision in mymind is a national disgrace.

Please let us know how you are and whether you have been successful in getting help.x

peck profile image
peck

I so very sorry you have all these issues.Pills are not always the answer but sounds like you could use some medication..... and soon.Good luck Peck.😊

TheAuthor profile image
TheAuthor

Hi Leeniebops

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information: fmauk.org/

I can see that you have been given some wonderful advice and so i will genuinely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken 

Blaze_Mitsu profile image
Blaze_Mitsu

Hey,

You really need to change doctors or surgeries.

I'm on a mixture of tramadol and duloxitine every day to help the pain and sleep, but I'm waiting to have the dosage increased for the duloxitine, as it's not as effective as it once was. But I'm not on loads of different pills anymore.

I hope you find a solution that helps you soon. It's different for everyone. 

X

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