Newly diagnosed Fibromyalgia

[Mysticalfairy212]

Hello, I’ve been diagnosed with the condition in the last month and so far have had very little support from my Doctors. I’m on antidepressants for the fatigue and take paracetamol. I work full time and have two young children at home. I’m finding it hard to even reach the end of the working week with the fatigue and on a weekend I literally ache everywhere so can never do much with the kids. I’ve got no clue how to manage this condition and don’t want to give up my life because of it. Has anyone got any suggestions of things I could try? Thanks x

[Hidden]

Hi hun- amitripyline seems to be the way doctors are advised to try us out for fibro- it is a good idea to take it around tea time so that it kicks in at bedtime and you are not sleepy.drowsy in the mornings. If paras are not enough maybe ask g.p to add codeine to cope with pain better. As for the fatigue-two kids or not- you have to slow down and pace yourself, easier said than done.. Maybe ask g.p for a month sick note and if your pay suffers apply for ESA to support you.. hope you feel more able to cope soon- if your kids like swimming- find a pool that has a jacuzzi and go in there for a soak in the warm bubbles, it does releive sore muscles.

[Hidden]

Hey, me neither, going it alone! I use amitriptyline too & find it helps to knock me out but because of work I normally take it 12hrs before I wake up so 6pm for a 6am alarm otherwise is makes me groggy but it's really annoying if I forget. I've started focusing on managing my energy and staying away from people who drain me. Have arthritis too so have just got a walking stick and although I hate using it, it does help as it Physically forces me to slow down. I feel for you though with small kids and full time work, be careful as I carried on trying to be normal and made myself really ill so never forget your health and your kids come first, you're no good to them if you don't take care of yourself first, good luck

[MichelleButterfly]

Hello Mysticalfairy212 and welcome to the forum, in the future you may wish to lock your posts to protect your and other members privacy, here is a link on how to, healthunlocked.com/fibromya...

Here is a link to our main website fmauk.org/ there is a lot of information on there you can have a look through. Is there any way you can see another doctor? In my personal experience and from what I've read, younger doctors seem to be more open and understanding about Fibro than older ones.

[Dinkie]

Hi and welcome to the club nobody wants to be in.

Lack of GP support is common I'm afraid. When I was diagnosed by our teaching hospital I was immediately discharged with the words "we don't treat fibro here, I'm discharging you back to your GP". So that was it. GP not interested so after much pestering and when I actually then put the request in writing so they couldn't deny I had asked, I got a referral to Guys and St Thomas's fibro clinic. Not sure where you are but if you can get a referral there it may help. It's a one only appointment but you would get to see different people with different specialities. I saw pyschologist, rheumatologist and physio and together they put a plan together and sent it to my GP. Otherwise we seem to be very much on our own unless we have a progressive sympathetic doctor, as some members have, we are stranded. I have now got a reasonable GP and life is definitely easier with her.

CBT has been helpful to some members, and in our area we can self refer so might be something you can consider. It's very early days for you and you need to be kind to yourself and give yourself time to grieve for the person you were and accept the person you are now, which actually is the same person but who now needs to put more planning into everything we do.

Regarding work - you are entitled to have an occupational health assessment. I was so anti having one but have to say it was the best thing that could have happened to me. "reasonable adjustments" were recommended and implemented by my employer and it has certainly made my life easier. Simple things like a proper chair, modified uniform, extra breaks, if I need them, ramps, handrails, car park space nearer to doors. Adjustments to start times etc. My colleagues generally have been good and understanding and we even have the odd laugh or two when my words get muddled.

There are lots of things out there to make life a little easier. I have various kitchen aids to help remove lids, hold items still, help me chop etc. Handrails, seats, walking sticks/crutches/rollators. Took me ages to get over the fact that I needed them but I found really colourful jazzy ones and I have accepted that if I can make life easier by using them then so be it.

Probably the hardest thing I have found to implement is the art of pacing oneself. If we have a better day we tend to want to do all those outstanding things/chores. Just because we did something yesterday doesn't mean we can do it today. If we overdo it on better days we are likely to go into flare so please try to pace yourself and be aware of what your body is telling you. Takes me forever to clean one room, I need a break every few minutes but as long as you accept your new limits and try and pace you will see the benefits overall.

And lastly don't loose your sense of humour. The only recommendation my rheumatologist made was keep your sense of humour and have PMA (positive mental attitude) not always easy but the folk on here will help. You will find members will provide a listening ear when we need to rant, help with advice on what works for us, share a joke or two and generally help each other through the trials and tribulations of living with fibro. No questions too silly to ask as you can bet someone else has asked it before, thought it or answered it!

[oldsouls]

I concur with all the other people. I cannot imagine having it so young with a young family. There are young people on this forum who have it or have had it when they are young and in the same position. So you are in the right place. There is much more info now but your doctor is you last go to unless, as was said, perhaps only if your doctor is young. Working is an issue and since I don't know the working arrangements where you live ie country I cannot advise. I do want to say that even in my day (just over 20 years ago) there was a fibro workshop lasting a week . It was an eye opener. Took me ages to remember they word fibromyalgia. Later I started to get more information. Is there an association or a support group near you?

As to other people who have asked does it get better, I have to answer no I am afraid. So pace yourself and educate people around you. This is very important. Make sure they understand. Give them some literature. I am going through a rough period with fibro and depression and only one friend supports me because she has it as well.

It can be a lonely

health condition.

However, the lovely people on this site will ensure you are supported even if you want to just talk. The best advice you have been given, and I agree, is to pace yourself. It is crucial. Your house will never be a clean as you would like it. If you can, try and budget for a cleaning person. If you can make this your first priority it would be a great help . Magnesium powder or tablet supplement is another expensive item that will help. I am/was worse when I can or couldn't afford it. This is outbreak I am having is one time when I cannot afford it, and probably why I am worse. Use a good quality brand though. Your pharmacy wilI advise you. I always negotiated a price even with my pharmacy (or drugstore?) . They have a price they can negotiate to. I am in Australia and it is not the nor to do this. I can guess that finances may be a problem for a young family.

About 15 years ago my niece treated her friend, who also had young children, with "Bowen Therapy". It comes under the guise of massage albeit it isn't massage. She found this worked with fibro sufferers. She said the skin felt different, like lumps under the skin and suggested to clients who presented with this type of skin to go and see a doctor. My skin now feels like this but it didn't then and Bowen didn't work for me as I also had disk problems.

Depression is said to be part of the condition with 90% or so of Fibro sufferers and you will probably always need medication. Avoid psychiatrists like the plague. There ant depression drugs are horrific.

Good luck and keep talking to people. You are not alone.

[Mysticalfairy212]

Thank you everyone for you help. It’s good to know I’m not alone as it sometimes feels that way.

I’ve had an Occupational health assessment at work and they are brilliant! They’re being accommodating and supportive. Much more than my GP is.

I’m on a trycyclic antidepressant anyway. It’s the tiredness that’s the worst. So far, my GP has just upped my Citalopram that’s made me tireder. Lol

[klr31]

Have you had your thyroid checked?

Karen