Desperate for advice!!!!

[Sarz31]

Hi I got diagnosed with fibromyalgia in November just gone, I’m a full time working Mum of 2, I’m struggling to get through my days someday as the pain is agony, can any give me any advice please, that will help me get through my working day and sleep well at night?

[JacquiRo]

Hi Sar

You know .. I have to say ... go to your dr and speak to them and ask for help... don’t be afraid to speak up if you are not happy with what they give you .... this is YOUR life.

Healing hugs x

[Sarz31 in reply to JacquiRo]

Thank you my dr doesn’t believe in it so I’m struggling who to turn too xx

[JacquiRo in reply to Sarz31]

See another one in the practice ... if not change drs! Don’t wait for them be proactive ...

Healing thoughts love and light xx

[Sarz31 in reply to JacquiRo]

Thank you I’ll give them a ring xx

[dannyxox]

Hi Sar like Jaqui said speak to ur Doc and hopefully get ur pain under control. Try pace urself and listen to ur body. It's easier said than done i got diagnosed over a year ago and still trying to adjust. Take care 😙😙

[Sarz31 in reply to dannyxox]

Thank you, I will, I’m so soft I just put up and shut up xxx

[Mary-intussuception]

What blood tests did you have Sarz? You could have over conditions that may have been missed as well as Fibromyalgia. Many symptoms overlap.

I would ask your doctor for the following blood tests : Thyroid Antibodies TPO and Tg (Thyroid Peroxidase and Thyroglobulin ) and full TFTs (FreeT3, Free T4, T4,T3 and TSH). ALSO some nutrients levels :

Vitamin D & Calcium; B12 & Folate; also Ferritin - as you could be low in some of these and need presribed supplements.

For example, one of the symptoms of Vitamin D deficiency is Bone Pain.

You could Google search 'symptoms of deficiencies in each of these on NHS choices " see if you have any. Also check out the list of symptoms of Underactive Thyroid on Thyroid UK website and see how many you have.

[Sarz31 in reply to Mary-intussuception]

Hello, I think i has a full blood count done everything but vitamin d came back normal, my bit d levels r back up now, the pain isn’t any better... when I say pain it’s more like a deep burning sensation... and restless legs every night, I’m on amitriptaline and been on it since November, do you think I should ask for something different, my dr has made it quite clear he doesnt believe in fibromyalgia so I just feel like I’m on my own , Rheuamatolgist diagnosed me xxx

[JacquiRo in reply to Sarz31]

Change drs as he or she isn’t helping you and under the charter that is what they are supposed to do xx

[Mary-intussuception in reply to Sarz31]

Hi again. I used to think a 'Full Blood Count ' meant everything but it doesn't. I think it just means a full count of all the white and red blood cells.

It helps if you can get printed copies of your blood test results. The actual numbers of Vit D result for example with range in brackets.

Burning pain sounds like inflammation do you think?

Have you had inflammation markers tested (C-RP or ESR) you probably have, if you've seen a Rheumatologist. Ask a GP or your hospital Consultant what Antibodies tests you've had. See if you've been tested for Rheumatoid arthritis.

Ask for Thyroid Antibodies TPO and Tg.

Also ask for the other nutrients levels too.

You can request a print out of your results. OR , when phoning the practice for results ask for the details - they should read them all out and wait while you write them down.

Didn't the GP or the Rheumatologist presribe anything for the pain? You could ask for a referal to Pain Clinic. Are you able to take Ibuprofen tablets? I find a combination of paracetamol and Ibuprofen helpful occassionally.

[Mdaisy]

Welcome to the FMAUK Community Sarz31 !

Living with Fibromyalgia can be so difficult can't it? However, I am pleased to say you should find this community a support network a great place for advice to help you to deal with the ups and downs of living with Fibro.

There are many post of interest on a range of subjects and members are happy to share their experiences in the hop it will help others as we truly understand Also do check out the FMAUK website fmauk.org which has a wealth of information about Fibromyalgia

As a newbie I have noticed your post is unlocked, you may wish to lock it so it is kept between this community only. Members often are reluctant to reply to unlocked posts and therefore locking it will generate more replies too. Here's the link which explains how to do this;

healthunlocked.com/fibromya...

I look forward to speaking with you around the community

All the best for 2018

Emma

[Sarz31 in reply to Mdaisy]

Thanks so much.. I think I’ve done it xx

[Manda1973]

Hiya Hun, Ime in the same predicament and i take a lot of medication which help with the pain during the night.i have twins, they are 15 now. Do you mind if I ask what medication you take.

[Sarz31 in reply to Manda1973]

Amitriptaline at night and just naproxen and cocodomol, what do you take and does it help. Xx

[Hidden]

Hello Sarz31 what do you do for a living hun? how many hours do you work>what medication are you currently on? might be able to offer experience if you come back to me..

[Sarz31 in reply to Hidden]

Hi, I’m a hairdresser I work Full time 40 hours, I’m on amitriptaline and painkillers cocodomol and naproxen xxx

[Hidden in reply to Sarz31]

Does the amitrip give you any relief or better sleep? Is there a stool you can squat on periodically during your working day to relieve leg and lower back pain? I would expect the naprox to keep your hands and wrists moving and

free of inflammation, co codamol ?? 30/500 how long ave you been trying these meds?

[Sarz31 in reply to Hidden]

I can sit in between clients but I find it tires me more if I keep sitting I could literally go to sleep sat up I’m tht tired... yes the naproxen help get my hands and arms going as I wake up with pins and needles most mornings I’ve been on and off naproxen now for around 10 months, cocodomol I take if I really can’t bare it as they knock me sick if I take 3-4 times a day xx

[Hidden in reply to Sarz31]

Could I ask how old you are hun? I know what you mean about co cod they do make some people feel sick, BUT taken with food (as all your drugs should be) they should be effective, I know you hairdressers skip meals-thats something you will have to stop doing whilst you take drugs of this nature,, your appts, will need to have breaks mid day to allow food and meds,, Naprox -ask gp about paracetamol INSTEAD of co cod and take together, DONt do this yourself , your hours are long- think about reducing and look into getting Employment & Support Allowances to subsidise your income, maybe consider having people to your home or their homes instead of long periods in a salon,, weve all had to make adjustments to our lives with fibro, the feeling tired could be the effects of Amitrip, this should be taken with your evening meal so that it has taken effect by bedtime and worn off my morning,

[Sarz31 in reply to Hidden]

I’m 31( too young to feel like this) yes I will ask my dr thank you, also I have been thinking about reducing my hours a little but I just couldn’t afford to, and I didn’t think I’d be entitled to any help because of my fibromyalgia... I will look into it thanks xxx

[Mary-intussuception in reply to Sarz31]

Sarz

What strength cocodamol are you on and do you take Lactulose medicine when you are taking them. Is any of the burning pain in the abdomen?

Just wondered if some of your pain could be caused by Diverticulitis because of the codeine. As it drys out stools, causes constipation and stops the bowels working. Retained stool filling the colon can put pressure on the circulation and also the spine which will main pain worse.

[Sarz31 in reply to Mary-intussuception]

I’m on 30/500 now but take as and when as they was making me constipated and I felt sick and light headed, but I’ve found myself taking them more frequently again because of the pain xxx

[Mary-intussuception in reply to Sarz31]

Yes, you are too young for this. What you need now is some affective pain relief sorting and a couple of good nights sleep. Keep going to GP till you get some help.

Have you thought of trying a lower dose cocodamol? Or take one of the 30/500 and one paracetamol? Whenever you take them make sure to take Lactulose as well to counteract the side effect of constipation, and drink extra water.

I had Diverticular in my early 30's. Used to buy Mucron tablets for catarrh. Didn't realise about the codeine in the tablets till a GP told me !!

[Matrix]

It’s not easy sweetheart having children and working that is. I can recommend taking magnesium and zinc good quality ones they help with pain .

It can be hard to get the help you need it does depend on what sort of dr you have . It beggars belief that with so many people with fibro that still family gps know so little . Take care sweetie xxx😇🌹😘

[Sarz31 in reply to Matrix]

Thank so much xxx

[does-the-NHS-work]

Hi,

For me it has helped to understand the condition FMS - helped me to tackle the triggers and symptoms. It is a syndrome condition a group of symptoms which consistently occur together,

So one thing can set another off, so, if you have pain, where has it come from?

Yes, rest, creams and other off the shelf meds may help but they will not treat the cause.

For me once I understood this I could try to work out what I am doing in my life that may be a contributor.

A working mum with 2 children is not easy task, I would agree, and little one's come first, that said, start to make a diary of your work and rest life, sometimes you just cannot see the wood between the trees, then look back at what is happening in your life, you may see some common patterns.

Tension and stress do not make any condition feel great and the truth about Fibro is the strong association between your mind and your physical symptoms.

This is a journey, that only you can work out, your GP can give you some ideas, for relaxation but there is no cure. For me I personally have made notes over time of my lifestyle to understand what I am doing that increases pain.

The other point is acceptance, in early diagnosis it is dam hard to accept, but you now know you need to take things differently - Over time this may ease, if you start to take control, you will find some relief, it just takes a little while for you to work it out.

It is like applying cream to an abrasion it may soothe it, but what caused the abrasion?

Hope this helps warrior.