Any help or advice really appreciated

[joanne1965]

Hi

I have just been diagnosed with Fibromyalgia this morning my head is all over the place trying to take it in and see what is going to help me cope and live with this pain.

Has anyone got any suggestions I could try please as I have no idea where to start

Thanks

Jox

[Clemaz]

I am in 1 year of diagnosis and still learning. I have learnt that pacing is a key factor, I was told if you do something e.g. a bit house work for 10mins you rest for double after so 20mins rest, it is hard to get your head round this change of life as I used to love nothing more than racing about going to the gym, but have learnt now I cannot and it will hurt you in the long run. Another thing is to get a good night of deep sleep so your brain and body can relax. If you start to struggle with sleep perhaps see your GP for advice or medication. If you work I would ask them for an occupational health assessment, as they may suggest amendments in your job e.g extra breaks, different work set up. I would watch your mood as this condition can get you down, dont be affaid to talk to someone or express yourself on this forum. We are all in it together and we know exactly what you are going through. love and hugs x x o

[Bobby16]

Can I say that you probably have had it a long time but haven't realised. I've not been well for 4 years couldn't put my finger on it. Was only diagnosed 8 months ago.

[Cape_Cod_Sharon]

Good morning Jox,

I'm Sharon/58/Cape Cod, Mass./USA

First...stop and collect yourself. It's a tough diagnosis, but remember this...it could be worse.

It took 15 years for me to have a conclusive diagnosis of Primary Fibromyalgia [which is FM w/ rheumatoid arthritis] When I was finally diagnosed I wept. Cried uncontrollably, couldn't stop myself. I was so relieved.

My Dr. treats my individual symptoms as there is not a medication to treat fibromyalgia. Some Dr.'s push the Lyrica but it does the same as an opioid pain reliever and Neurontin [gabapentin] also Lyrica has the capability of increasing both suicidal and homicidal thoughts and/or actions. My personal physician will not prescribe Lyrica. But it is up to each individual and tolerated differently from patient to patient.

I am taking oxycodone 10 mg. [back pain/other pain], gabapentin 800 mg [X 4 a day for nerve pain/neuropathy], Flexeril 5 mg. [for spasms] and a low dose antidepressant to help me stay asleep... try to get up and move around every hour so as not to be completely sedentary. Nothing really helps my sleep. So, I sleep [nap] when I have to and try to get 4 hours overnight.

But I was also recently diagnosed with end stage cirrhosis of the liver. And I need a liver transplant. So I am beyond exhausted. My body/back pain is intense and I have ascites [build up of fluid around abdominal wall] and edema [swelling of legs and feet] I am taking 40 mgs. Lasix a day for the fluid. The one symptom that is currently driving me mad is intense itching on my back and upper thighs. It is constant and maddening. And the one drug they prescribe for pruritus [itching] is gabapentin, which I take 3200 mgs. of each day. [A high dose, as high as FDA will allow per day] If I was not taking the gabapentin I'd probably die from excessive itchiness. [I hope I'm kidding!]

Then I have co-morbid conditions to the liver disease which are the fibromyalgia, anxiety, rheumatoid arthritis and chronic Lyme disease.

Find yourself a good rheumatologist, one who has patients with fibromyalgia and has successfully treated them. Find people who live in your area/region and find out what they are being treated with and by whom. This quickly became lengthy...I hope for the best for you. Get to know the lovely people on this forum, there is a huge amount of useful information here.

~Sharon

[Cape_Cod_Sharon in reply to Cape_Cod_Sharon]

PS I don't want you to be confused about the itching. It is a symptom of the liver disease NOT fibromyalgia.

[Dizzytwo Moderator in reply to Cape_Cod_Sharon]

Hi there Sharon how are you doing good to see you posting {{hugs}} xx

[Dizzytwo Moderator]

Hi there joanne1965 let give you a very warm and friendly welcome to our group. It can be very daunting when you are first diagnosed with fibro. But please try and remember we all suffer with it differently some worse than others. You may like to look at this post DanielleGemma Put up a few days ago it may help you a little.

healthunlocked.com/fibromya...

You may also like to visit our mother site it has a wealth of information that you may find beneficial. fmauk.org

I have noticed you have not locked your post you may like to do that now. It keeps your post private and it also may encourage other members t reply to your post, Here is a link to help you lock your post. healthunlocked.com/fibromya...

If there is anything I can do to help please ask. I hope you feel welcomed xx

Mo

[Hidden]

Iv had it 9 nearly ten years an I still struggle to come to terms with my limitations, I wish if found this site before now,as the support on here is invaluable its a lot to take in Joanne give yourself time to get your head around it an hope to see u on here take care x

[Hidden in reply to Hidden]

I still struggle too after so so long diagnosed at 18. I am 31 now I still struggle, like lorsxxxx says give yourself time and we will be here for you Joanne in any way we can help

[Hidden in reply to Hidden]

Yes there's always people around with great advice an an ear too listen we have a giggle too.personally if I didn't HV a giggle I think I'd loose the plot!! Some say I already have ;0)

[Hidden in reply to Hidden]

Well.....lorsxxxx we wouldn't ever think that ....🤣🤣🤣

[Hidden in reply to Hidden]

:0)

[JANNH]

Hi Joanne - so sorry to hear you are feeling so overwhelmed - I remember feeling just like that - nearly a year ago now, especially with all the variety and enormous amount of advice, meds and other 'remedies' . My approach was to take each symptom at a time and find an approach that helped me manage it. So the most urgent or debilitating symptom should maybe be your first priority.

if its pain then there are loads of things you can try - it does take perseverance and some time to find the one that suits you though. For me it wasn't amitriptyline , but for many that helps. I use Epsom salt baths,occasional pain meds and yoga.

if its sleep disturbance again amitriptyline is often prescribed - I use meditation, sleep spray, Sominex and sometimes a tramadol - and generally my sleep is loads better than a year ago.

I also bought a book called the Fibromyalgia Handbook, which though American has loads of good advice. As has our mother website of course.

I also got terrible skin rashes and itching for a while so I had to find a remedy for that - the difficult thing I find is the random nature of this condition but I try to tackle each one with some determination not to let them overwhelm and take over my life altogether and I strongly believe this is possible for many fibro warriors.

CBT might help you too or a good therapist who can help you work through the emotional impact of the diagnosis and ongoing impact. Pacing is often recommended and works for many - doesn't work for me so well but it may be worth trying.

And friends and family of course - not everyone will know how to support you but find one or three who you can turn to when it gets rough.

Get a good relationship going with a doc or nurse practitioner who knows about this condition and is happy to see you and work with you.

Good luck with this Joanne. let us know how you get on.

Annx