FMS Diagnosis

[jjsmum]

Hello all, I have just been diagnosed with FMS. I don’t see the rhuemotologist for my next appointment until November. I have been feeling pretty bad in myself since falling pregnant with my second child and I think this is where it all began.

I’m only 26 and I feel as if I should be older. There are days where I feel like I can’t move and by 12 midday I need to go back to sleep because of the exhaustion and pain. I am deficient in iron, folic acid and vitamin D. I have been prescribed the tablets to try and raise my levels but I don’t feel like it’s getting any better, I’m fact it feels worse. I’m on gabapentin for nerve pain as well which they initially thought was sciatica but it’s been ongoing on for a while and they’ve increased my dose from 100 to 600mg. When I wake up my joints hurt, it hurts my feet to walk and any simple job that requires bending or washing the pots as such, agonises my left leg from my back. I have tingles and shooting pains in my arms legs hands feet and toes and it can be extremely painful, especially in my fingers.

I just wanted to know if this is normal for a FMS patient. This is all new to me and I am just tired of everything that is going on.

Thanks guys

Georgie xx

[kjaylah]

Hiya Georgie.

27yo here. I have ME and recently my GP Diagnosed me with Fibromyalgia but I’m waiting for my referral to the rheumatologist to come through still to get confirmation.

What you just described is very typical of FM.

Fatigue is a big factor in Fibro and explains why you need to sleep mid day, just try and take regular rest breaks during the day if you can and track what energy you are using and what for.

The doctors will keep an eye on your levels, quite often you will feel really crappy but they will improve themselves and you will come back with ‘normal tests’ which is beyond infuriating!

I am also on gabapentin, it will take a while a while to settle down and I personally find it takes the edge off but doesn’t help all pain. Keep moving as much as you can as I personally feel worse when I don’t move enough (I.e. if I stay in bed all day).

Everyone’s bodies react differently, so it may be trial and error with different tablets before you find something you find that works for you- but give them a good 3-6 months.

I have put on 3 stone over the last 10 months since starting Gabapentin- so just keep an eye on your weight!

Unfortunately there isn’t much choice for treatment with fibromyalgia (or ME) so it is a case of doing what you can and learning to adapt your life.

I personally don’t have children as I’m too ill, I’m still hoping that one day I’m able to though

I hope you have plenty of support at home!

[jjsmum in reply to kjaylah]

Yes, the exhaustion is awful. I have two children aged 1 and 3. Thankfully they still nap so some days where I’m feeling it full force I take them up to bed with me to get some sleep. Otherwise, I’d struggle all day to look after them.

I suffer with hand tremors as well. Sometimes I shake really bad and struggle to do little things like turn the taps on or undo bottles.

I’m also on sertraline and I take that first thing in the morning. I often wonder if that makes my tiredness worse.

I have put a lot of weight. They thought it was because of my thyroid being up and down but now that’s controlled.

Yes, I have a lot of support thankfully. I hope you do too and hope you have your babies when you can 😊xx

[kjaylah in reply to jjsmum]

I was on sertraline as well for a about 10 months or so I took it at 6pm as I was told it can make me sleepy, so perhaps ask your doctor if you could change the time of your dose? I came off of it though as I didn’t find it helpful to me. So they’ve put me on duloxetine now.

I’m glad you have a good support system

Make the most of your rest time, just make sure the naps aren’t interfering with your nights sleep!

[Midori]

Firstly; Welcome to the Fibro club. We're all in it, and no one asked to join!

It's difficult to know what is normal for us Fibromites, each of us is different, because Fibro encompasses a vast range of symptoms, sometimes encompassing things we may already have.

For instance, for me nowadays, it's gut problems, exhaustion, but overwhelmingly, stiffness. I also have Arthritis, and a knackered knee, but I treat it as Mind over Matter when it comes to pain. I have found that drugs don't help me that much, I have become accustomed to operating with a certain level of pain, and I can cope with it. I use Ibuprofen (over the counter) when it gets beyond my natural level; and When it really kicks me in the teeth. I have a small amount of Co-dydramol. I need to get some more; not because I have run out, but because the prescription is out of date. (shows how often I take them!) I an a very strong minded person, and I will not get addicted to these things.

It's difficult when you are new to the condition; I will suggest you look up The Spoon Theory on the Net, because it gives you a way to explain to people how Fibro affects you in regard to energy levels, and why you may not be able to party as often as you used to.

Many GPs do not understand Fibro. The best thing you can do is either have them sent a booklet on it, which is available from this forum, whilst at the same time becoming an Expert Patient in regard to your own care. Some GPs, especially the older ones, do not accept Fibro exists, and will try to fob you off, or give you antidepressants.

I don't know if you have had your baby yet, but be careful if you haven't with what you take. You will also need to be careful if you are planning to breast feed, as some medication can be excreted in your milk.

You may find you need to change your diet, as sometimes we can develop intolerances to certain foods, but don't be slavish about it, or you could risk malnutrition. Two of the most common intolerances are Gluten and Dairy, but Do not announce you are to your GP, ask him about it before you jump.

I hope this helps a little,

Cheers, Midori

[jjsmum in reply to Midori]

Thank you.

Yes my mother has FMS as well and I see how tired and in pain that she is.

I am looking and reading at certain articles on the web regarding it and trying to find out what it’s all about.

Yes my boy is now 1 but he and his brother (3) run me ragged.

I have support at work as well because ironically I work for the pain clinic!

I already have coeliac disease so I am allergic to wheat and gluten anyway. I was diagnosed with that when I was 3.

Apart from my mum and the clinicians at work, nobody really understands how I’m feeling so i am grateful to have found this support group.

Thank you x

[klr31]

Check your thyroid levels yourself and don't accept they are 'normal'. You also need antibodies testing, as well as D, B12, folate and ferritin. Look at the thyroid site on here.

Karen