Finally diagnosed, I have Fibro... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Finally diagnosed, I have Fibro...

LisaMouse
LisaMouse

Hi there, my names Lisa and I am a 27 year old who has just been diagnosed with Fibromyalgia.

I have been suffering from chronic neck pain since Easter and have found my pain symptoms worsening and my painkillers (codine and tramadol) ineffective.

I finally managed to to see my neurologist last week (the original appointment was set for February 2014) and he has diagnosed me with Fibro. He looked back over my records and found I had symptoms which date back as far as 2002 without a successful diagnosis.

I am due to start new anti depressant tablets tomorrow to act as a pain killer, and I am really suffering with work.

I struggle to work full time and can see my employer getting fed up with me. However I have a mortgage to pay and it would seem not working isn't an option as I can't lose my home. (Something else to keep me awake at night)

I was just wondering if anyone could offer me and advice or experiences in living with Fibro as I am so new to this and just need to find support from people who are going through what I am.

I am also in the midst of trying for a baby, so any information regarding pregnancy and Fibro would be greatly appreciated.

Thanks in advance

A very painful Lisa x

13 Replies
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Morning Lisa Mouse,

I welcome you to our wonderful site but I am so sorry you have Fibro, However, it is not the end of the world and although painful you will discover it can be lived with.

This site is full of wonderful people who all suffer with fibro in varying degrees so you should get lots of info from everyone.

One thing I would suggest as you are new to this go up the page where there is a box with a butterfly on it tis is Fibroaction our mother site. Click on it and have a wander about see if it answers any of your questions.

Now babies we love babies and our very own moderator has a two year old little girl so she must be fairly up on the scene she is Mdaisy you can always ask her.

The big question is how to control your pain. Good startwith the anti depressant used as pain relief you will be surprised how good it is but do give it time if you need to top up with paracetamol

and dont forget the Doctor is a friend who if up on Fibro will be a great help.

Lastly this site loves to have a bit of fun if you have time and you see something starting a quiz a outing whatever do join in you are most welcome. Laughter we find de stresses us and stops us thinking about our pain so we try and have fun is we can :) Welcome

xgins

Welcome x

Good morning and welcome Lisa Mouse, soft hugs x

Good morning and welcome to this lovely site full of wonderful caring and supportive people.I have really found that this site has helped me so much :) Regarding your work,do they know you have fibro?if not,it may be beneficial to explain to them or show them a info leaflet about fibro and it's symptoms.Is there any way you could consider even cutting back a small amount of your hours so as to eleviate some of the stress and problems working full time is causing you.If you are struggling then this is going to add to your pain unfortunately,maybe you could have a look at workplace assessment to see what improvements work could make for you.I think this is something that you find out via occ health but Iam not sure but there will be someone else on here who will be able to advise you better as I no longer work.Regarding the pregnancy,I had my second son who is 5 now with fibro.Looking back now if there was something I would have changed then it would be not to have had him without no support as it was so tough.Pregnancy is hard enough when you are healthy and having fibro on top is a challenge so I would say make sure you plan well in advance and get as much support as you can in place.You will need to chat with your g.p re meds as some meds are a no no when pregnant and some you can reduce down like I did and some are o.k.I was taking antidepressant,tramadol and dosulepin when pregnant and had to reduce the dosage on all of them.Also if you plan to breast feed you may have to stop some meds as well.I found the first three months and last couple the hardest but during the second part of pregnancy I was symptom free which was heaven.If you contact u.k fibromyalgia they have an info booklet on fibro and there is a section on pregnancy and fibro.I think the main importance in living with fibro is to read up on the condition and what meds and treatments may help with your symptoms.Stress will make fibro worse as well as pushing yourself to do things as I used to do.Learning to accept that your life will be different and grieving for your old life are challenges that you will face.I think that it may be beneficial to give yourself and your body time to adjust to your new diagnosis before becoming pregnant and as you are finding pain is a problem it may be advisable to find treatments that are going to help ease your pain and stress before coming pregnant.I hope this has helped you,feel free to message me if you want more help or info xxx

Hi there, as Haribo said you should ask to be referred to your employer's occupational health service for a work assessment. They will look at what your job entails and see if there are any reasonable adjustments that can be made to reduce the level of pain doing your job produces. The key words are 'reasonable adjustments'. If it is going to cost a fortune they don't have to change anything. Fibro also come under the equalities act which means your employer cannot get rid of you because you have this condition, however they can if the condition leaves you unable to do the job you were initially employed to do. I am not telling you this to worry you but to alert you to the possibility so that you can work around it if/when you are asked about what you can and can't do.

Your pain medication may be a trial and error process to get what suits you best, morphine based pain relief such as tramadol and cocodamol are not always the best because they are short term pain relief and fibro usually responds better to a longer term pain relief such as an anti depressant based one with the short term stuff as a top when needed.

Haribo gave great advice re getting pregnant with fibro, which is not something I can help with. Good luck,

Linda

Lotus954
Lotus954 in reply to Lruk

Tramadol now comes in extended release formulas. The generic (which doesn't work for me) is Tramadol ER It comes in 100, 200 and 300mg strengths. What does work for me is Ultram, which is a tramadol formula, but is brand name and they do something that makes it work for me. It comes in the same strengths. I'm on Ultram ER 300. It's very effective for me. I take Doxepin for depression and anxiety. It doesn't put weight on me like amitriptoline. I've just recently been put on it and I like it alot. My advice to you, like another member has said, is accept that you have the condition and take care of it. Don't fight it by doing a lot. My habit is to do tons of stuff when I'm feeling good and then the next day I get slammed. Pace yourself and don't push. If you can, find a good masseuse. I had one and the massages really helped. You won't be able to get a massage like most people. If they press on you, you will be in pain for weeks. What you need is to be barely touched. There's a name for it. It's called effleurage. It's hard on the masseuse because they are used to digging into people. Trust me on this, even if you like it while it's being done...don't do it. Your body will rebel like it has never done before. But if you get effleurage, you will feel better for many days. As for your employer, when you tell him that you have fibro, and you really have to, you should have something that explains what it is. I just got the following from WebMD. It's as good an explanation as I've seen around. The Fibromyalgia Network used to have a booklet, but when I went to try to access it, I learned that it had closed down. Too bad. Here's what WebMD has:

Fibromyalgia is the most common musculoskeletal condition after osteoarthritis. Still, it is often misdiagnosed and misunderstood. Its characteristics include widespread muscle and joint pain and fatigue, as well as other symptoms. Fibromyalgia can lead to depression and social isolation.

This overview of fibromyalgia syndrome (FMS) covers symptoms, diagnosis, and both standard and alternative treatments.

What Is Fibromyalgia Syndrome?

A syndrome is a set of symptoms. When they exist together, they imply the presence of a specific disease or a greater chance of developing the disease. With fibromyalgia syndrome, the following symptoms commonly occur together:

Anxiety or depression

Decreased pain threshold or tender points

Incapacitating fatigue

Widespread pain

Are Women More Likely to Get Fibromyalgia Than Men?

More than 12 million Americans have fibromyalgia. Most of them are women ranging in age from 25 to 60. Women are 10 times more likely to get this disease than men.

What Are Fibromyalgia Symptoms?

Fibromyalgia causes you to ache all over. You may have symptoms of crippling fatigue -- even on arising. Specific tender points on the body may be painful to touch. You may experience swelling, disturbances in deep-level or restful sleep, and mood disturbances or depression.

Your muscles may feel like they have been overworked or pulled. They'll feel that way even without exercise or another cause. Sometimes, your muscles twitch, burn, or have deep stabbing pain.

Some patients with fibromyalgia have pain and achiness around the joints in the neck, shoulder, back, and hips. This makes it difficult for them to sleep or exercise. Other fibromyalgia symptoms include:

Abdominal pain

Chronic headaches

Dryness in mouth, nose, and eyes

Hypersensitivity to cold and/or heat

Inability to concentrate (called "fibro fog")

Incontinence

Irritable bowel syndrome

Numbness or tingling in the fingers and feet

Stiffness

Best of luck, LisaMouse. We are all with you. The rule is that you have to name the baby after all of us. lol.

Hi Lisa,

well if it's advice, support and laughter you need, you are in the right place. This site is fantastic for everything....plus we are a very friendly bunch into the bargain.

Make yourself at home :-)

Babies, I love babies :-)

Hugs

Jillyxx

Hello everyone

Thankyou so much for the warm and soft welcome.

I am looking through everything you have all written and will take as much advice on board as I can!

I should think I may become a board regular as its nice to speak to people who are a lot more clued up than me on this subject and who actually understand the condition.

Thanks again x

welcome sweetie I hope the meds help but it may be a case of try them and see we all seemed to have gone through a lot of medication to see what suits us but unfortunately there is no magic wand :) just take it easy while your brain adjusts to your body mine is stilling rebelling hee! sending gentle fluffy hugs xx

Hi LisaMouse and welcome. Don't panic!! You will find your way and it takes time to adjust and find out all the information you need to deal with fibro. Just take it step by step, but don't overdo it either. It's really hard coming to terms with it all and pacing your lifestyle to fit your fibro. We are always here to lend a listening ear and offer good advice. Take care.

Tannels x

Hi lisamouse, welcome o our caring sharing laughter fibro club lol, it's a brilliant site mdaisy and our volunteers are brilliant at helping us out, even tho they have pnty of pain themselves, feel free to rant rave, moan,groan, we are all in the same boat and are here for one another.....gentl hugs ...Dee xx

Hi Lisa, and welcome to the fibro on-line family! Your symptoms sound very similar to mine when i was in my 20's & it all started for me then too. Have you been given x-rays & a scan?

Warm wishes, Georgina :-) xx

Your not new you probs had it since 2002 lol just newly diagnosed unfortunatly like before you ll have to go through trial n error with meds and when to take it easy so sorry but theres no cure just coping as you have been your an expert already xxxxx

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