Feeling Rubbish

[denise123]

newly diagnosed with fibromyalgia what happens now does any one know please?

[Starbys]

Hi Denise123, sorry to hear you've recently been diagnosed with fibromyalgia.

It's difficult to come to terms with a long term condition, and we all understand that here so you've come to a good place.

Although there isn't any treatment, there are many things that can be done to improve the symptoms and manage it over time so that it doesn't take over your life. So although it's difficult to get used to, there are positives and many people find they are able to manage their condition - with medical help - so they can still carry on living a full life (I can't say that's the case for everyone but for many it is, and for many with some adjustments to their lifestyle (eg pacing themselves so they don't overdo it, many people find gentle stretching exercises help, etc) and the right symptom management they can still have a good life even if it is different to before).

This is a link to a booklet which i think is a really good overview of the condition, things that can help, etc to help with giving you an understanding and an insight into what to expect both in terms of the condition itself and also what the NHS can do for you and tips of what you can do yourself.

Here's the link:

arthritisresearchuk.org/~/m...

It can also be useful to show this to your family and close friends, to help them understand. People can find it hard to understand, but the more they understand the more they can support you so this booklet is worth showing to people.

Were you diagnosed by a rheumatologist?

If so did the rheumatologist say that he/she was planning to see you again? Or did they say they'd discharge you back to your GP?

Unfortunately many rheumatologists only give a diagnosis but do not offer ongoing follow-up so they discharge back to the GP once they've made the diagnosis.

Whether a rheumatologist is going to see you again or whether your GP has been handed back your ongoing care of the fibromyalgia, either way whichever doctor it is, should be able to offer you help with managing your symptoms.

Have you been prescribed any medicines yet?

Or been given any other advice?

Please don't feel that you have to answer any of these questions as you absolutely don't at all - it's completely up to you.

I'm only asking so that if you wanted to tell me, then if I knew the answers to these things I could give you more info about what to expect/what happens next etc.

But please only answer them if you want to, as it's your decision entirely.

I am not a doctor so please don't take anything I say as medical advice, which comes only from doctors, but I'm a very longstanding patient so know a lot and like to help people out if I can.

You always have to work with your doctor, and if you are comfortable with their advice to follow it, but as many doctors are not very knowledgeable and/or supportive about/of fibromyalgia syndrome (by no means all doctors though as some are very good), it can often help to get an idea of what kinds of treatments and advice are available to fibromyalgia patients by asking other patients, who can give you info and their experiences etc, so that if you think something mentioned may have the potential to help you, you could then ask your doctor about it and go from there with your doctor.

The FMS forums on healthunlocked also give general support and people share their experiences, ask each other questions about symptoms, what helps others manage certain pains etc. and generally give each other moral support. you don't have to contribute but can if you want too, as much or little as u want.

I hope this helps.

If you want to know more, or just need support coping with your new diagnosis, then you can post on the forum(s) anytime as people will always be around! i'll be around too!

Take care,

Starbys

[Hidden]

I'm always a bit worried about a Fibromyalgia "diagnosis" as it is a syndrome not a disease. What it says is that you have a collection of symptoms "they" have decided to call Fibromyalgia. Please make sure you are tested and tested again for other things especially hypothyroidism and Vitamin B12 deficiency. Don't accept being told your tests are normal ask for a copy with the ranges and post on here for advice. Take control of your health, I know it's not easy when you don't feel well. I've been there.

[denise123 in reply to Hidden]

Hi Fredapain I am at the end of my tether at the moment I have had every test under the sun also xrays all fine. I really thought I had got a thyroid problem but I haven't it seems. Its a strange one. I had been on antidepressants for years. My doctor and myself decided I could try and come of them a few months ago, so I came of them slowly and I felt fine. I had not taken any at all for about 3 months and I started having so much pain in various different placed...hence all the tests....all negative. I am now back on a low does of fluoxetine and co codamo the pain meds dont work at all, only been on fluoxetine a week so will see......I have actually on occasions had a lot of pain in various places for years but just put it down to my age....Im 56. Now im wandering have I had fibromyalgia for years and the fluoxetine helped. I just hope now I am back on the meds I am hoping my symptoms will get a bit better....thank you for replying to my status.....I forgot to say I am actually a very fit person I normally swim a lot also walking etc, at the moment I cant do any of these.....

[Hidden in reply to denise123]

I was on Meds and ill for about 7 years, all my tests came back as normal or within range. My illness seemed to start with increasing severe facial pain, I do get migraines as well. I eventually got on top of the pain with Botox.

I think it was then I noticed all the other pains in my body and how weak my muscles had become. Still all my blood tests came back in range, but my nursing background told me something wasn't right. I was so tired! I got a referral to an endocrinologist and his tests came back normal/in range. But I was sure my symptoms pointed to hypothyroidism.

As my facial pain improved I was able to do some research. I found that the blood tests we do in the UK are not very good at picking up hypothyroidism. Thank goodness I didn't accept all those "normal" results.

So, all I really want to say is, don't always accept it when a Dr says your bloods are "normal", blood tests can say much more than that. You need a copy of the results and experienced people on here will advise you if you post them. You don't have to follow the advice, but I did and I'm now much better.

Good luck anyway, it's awful having any sort of pain.

[denise123]

Thanks im a hca on cardio and respiratory ward i think that is why i have kept on at the docs because like you say, you know your own body. I keep saying to my husband im still not canvinced its not a thyroid problem. Im going to docs next week again i so will ask for a copy of my blood work ( although im not looking forward to asking....) Did you get diagnosed with fibromyglia or was it your throid? I just want to stop aching especially my hands and feet. Feet not too bad but just using a computer or my phone leaves me in so much pain in my wrists and fingers i have to stop thanks for the advice and listening

..

[Hidden in reply to denise123]

Hi Denise, I would advise you to go to the web site TPAUK.com. There is information on there that that may be helpful for you. You need to read as much as you can to become informed. If you go on the forum it is enlightening to read the experiences of others.

My GP diagnosed me with Fibromyalgia and said I should accept his diagnosis and look at going on benefits!

First I requested a second opinion, that was the appointment with an endocrinologist. I couldn't believe that he didn't even do the correct blood tests, he thought I might have Polymyalgia Rheumatica. I has no symptoms of this but my ESR blood test was raised.

So, I paid my money and saw Dr Peatfield privately, you will see he is on the TPAUK web site. At last I had found a Dr who looked at my symptoms and not the blood tests. Before this appointment I honestly thought that I was slowly dying, I told my husband this a number of times. Since my appointment in November I feel I am getting my life back. The hypothyroid diagnosis and treatment has saved my life. I haven't told my GP yet but I will do when the need arises. I want to wait until I am much better then he can't say I am doing the wrong thing.

You are allowed by law to have copies of your medical records. I asked my GP for the blood results for the last 7 years. He went one better and gave me complete on line acces to all my records at the surgey, some but not all surgeries will do this. When they initially asked me why I wanted my blood results, I just said I wanted them for my records. It's really no business of theirs but I didn't want to be rude.

Don't give up keep on reading and researching and you will get there in the end.

Just remembered also look into B12 deficiency, I am astounded by what I have read, so I am also supplementing B12.

[denise123]

Hya Fredapain....could you tell me how much you paid to see the doc privately? I had to see a different doc this time and he was awful....I told him how I felt. Low temp, ear ache throat ache, some much pain in my hands especially my right hand ( I had vertigo and a perforated ear drum 4 weeks ago).....He took my temp and just said normal....then looked in my ears and said normal but ear wax in the right one I said "that's good has the hole in my right ear healed up then" he stutted a bit then had another look, he then said it was fine. He so obviously had not looked at my notes at all....just sent me off with co-codomol and ibuprofen.....these do nothing for my pain at all.... Needless to say I dare not ask for my notes he was so dismissive as if I was making everything up. He did tell me to make another appointment with my usual doc when she comes back from holiday....I cant get in until 9th Feb.....I have actually been monitoring my own temp and this is what on average it usually is...35.4 at 6 in the morning then it will rise once im up and about to approx. 36.6.....If I exercise and I feel clammy it can go back down to 35.4 and lower at times. I am now trying to keep a log of my temp for a couple of weeks......Phew that was a long one I hope you can understand it all....thanks so much....Denise....