Hi there - I'm new! In need of advice :)

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Re: Hi there - I'm new! In need of advice :)

Postby anonymouse » Tue Apr 24, 2012 2:03 pm

Hi Ariel,

Sorry to hear about your problems and I'm glad to read that you have started the journey to diagnosis. Your symptoms are very much like fibromyalgia and also a pain syndrome called Myofascial pain which is common with people with Fibromyalgia. Having said that you could have a number of other things an not Fibromyalgia but you be assured you are on the right path in having tests done and a referral.

I have more information on my website and only wrote a section on Myofascial pain yesterday, I also have my experiences of Fibromyalgia on there too and because it's new I'm talking about it quite a bit as I want to make sure it's right for people like yourself so any feedback is greatfuly accepted if you have time to look.
Good luck with your diagnosis and I hope you get some relief very very soon.

Kind Regards
Anonymouse
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Re: Hi there - I'm new! In need of advice :)

Postby Ariel » Tue Apr 24, 2012 2:10 pm

Thank you so much - I shall check that out now.

I actually went to A&E this morning as my pain was so intense. Luckily, they were able to rush my bloods - everything is clear (which is good news) apart from folic acid which is low.

The said they can't do anything for me and that I just have to take the painkillers and wait for my rheumatologist appointment. I'm both happy and sad. This pain is horrid, and this morning I tried to write a list of my symptoms and noticed how much my handwriting has changed in just a week.

They also said the pain killers I'm on will take a few weeks to take effect - I can't be in pain that long :(

I've emailed work - told them I'm going to get a sick note for the rest of the week. I'll take the tabs, get used to them, rest and hope that come Monday I can get to work.

xx
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Re: Hi there - I'm new! In need of advice :)

Postby anonymouse » Tue Apr 24, 2012 3:01 pm

Oh dear, I know exactly how you feel, as I did exactly the same and attended A&E once at the beginning because the pain was so bad.

Let's see if I can get some good advice down here for you to help get you sorted, this is what I would do:

If you have not been given a prescription only painkiller I would book an appointment now with your GP so you can be seen tomorrow or over the next few days. I would get down to the pharmacy or get someone to go for you and get the strongest painkiller you can. Which is probably a paracetamol and dihydorcodine mix like Paramol or something like codine or codeine paracetamol mix. I would see how you go with those overnight and if it works then you can always cancell your appointment. If it doesn't I would be asking my doctor for a fairly strong pain killer like Tramadol (check it is ok to take with amitryp) or at least something with a bit more codine in. If you have any swelling then ibuprofen might help, you can take it with paracetamol but I'm not sure about the others and discuss this with your GP as he/she might be happy prescribing a NSAID drug to help with any inflammation. (take after food as they are harsh with the stomach)

I would imagine Amitrip will take a few weeks to work and you may have been started on a low dose so the doctor can gently increase it to a level where you benefit from it. I'm a little surprised that this is all the doctor prescribed if you were in so much pain there and then as its more of a longer term drug, but he/she is far more qualified than me on the matter.

I hope that advice helps. Don't go taking anything I've suggested without speaking to a pharmacist first as they are a great underused resource and are qualified to assess your suitability for these medications and I am not, I'm just going from past experience. It goes without saying that you should not take any prescription only drugs without talking to your doctor first although you shouldn't be able to get hold of any anyway.

Hopefully you will be able to find some short term relief with a drug or drug combination I have suggested so you can tide yourself over until your Amitryptilyne works or you get an appointment with a consultant. I'm not sure doctors quite understand how painful an initial flare up can be and which drugs just don't work.

I wish you all the best and if you need any more information give me a shout.

Kind Regards
Anonymouse
Xxx
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Re: Hi there - I'm new! In need of advice :)

Postby Ariel » Tue Apr 24, 2012 4:29 pm

Hey there - thank you for that.

I'm seeing my GP first thing to see what else we can do pain relief-wise. I had tramadol once before, I hallucinated! It put me off to ever go near it again.

My problem right now is that with no diagnosis, how do I tell work 'sorry, I'm in too much pain but they don't know what it is'? I've only been there 2 months, it's like a dream job, but requires so much focus - something that I'm lacking right now. I'll be off for the rest of the week - get used to the side effects of Ami....but then I don't know what will happen :(

x
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Re: Hi there - I'm new! In need of advice :)

Postby diane1 » Tue Apr 24, 2012 4:36 pm

Hi :welcome:

Sorry to hear your problems . I know how hard it is when you dont have the right meds and facial pain is harder to bare. I had this for about 4 months last year and then luckily it went to be replaced by tinitus typical fibro, you never know what you'll get next. I did find however that a hot water bottle in a fluffy cover held over the painful part of the face did help a bit in relieving the pain for a time. Its not the answer but it might help a bit.

Good Luck with the GP's.

Diane
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Re: Hi there - I'm new! In need of advice :)

Postby Ariel » Wed Apr 25, 2012 1:08 pm

Good morning everyone.

I went to the doc again today as I needed to be signed off :(

The painkillers have turned me in to a zombie, which means I can't work. Seems i can't work with the tabs and can't work without them. I'm hoping the side effects will soon subside and I can get back to work. I spoke to work today and understandably their patience seems to be wearing thin - I've been there for 2 months and now I'm in day 3 of being off. I've asked them to let me have the rest of the week of so I can get used to the side effects; they said this can't last forever.

Trying not to let that phase me, I know the more stressed I am the more I hurt.

In other matters relating to my body, I had some results from an MRI scan on my back come through. These were done privately as I am currently in a court case relating to an accident I had a few years ago. The results indicated that one of my discs is desiccated - otherwise known as 'dried up'. I looked up the symptoms - all the pains I have in my legs are similar. of course, this doesn't say why every other part of me hurts, but what's annoying is my GP won't look a the results as they didn't request the MRI.

I'm going to go back next week to see if I can push them to send me for another scan if they won't look at my private results.

So I'm somewhere between frustrated and well, more frustrated!!

The doc also said that if I'm tired and in pain then I need to exercise...struggling to battle that right now.

Just glad I'm inside on this really wet and cold day!
x
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Re: Hi there - I'm new! In need of advice :)

Postby FluppyPuffy » Wed Apr 25, 2012 1:53 pm

:wave: :wave: Ariel, there's no wonder you're stuck between frustrated and even more frustrated :facepalm: :facepalm: I think your GP might need a bit of :hit1: :hit1: :hit1: where those test/scan results are concerned :facepalm: :facepalm: Not even acknowledging them because they were done privately sounds so childish, maybe your GP should go and sit on the norty step util they realise that having the scan done has you from having to be sent for one :nono: :nono: :nono:

Are you steadily reducing your current meds for coming off them?? With a lot of our meds needing time to build up, they also need time to come out of our systems as well, rather than just stopping them and going cold turkey. Hope you can get used to things before your return to work :fingerscrossed: :fingerscrossed:
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Re: Hi there - I'm new! In need of advice :)

Postby anonymouse » Wed Apr 25, 2012 4:01 pm

Yes that is truly terrible for your GP not to take into consideration your MRI results you obtained through other means. I'm not quite sure what his issues are, normally a Radiologist makes a report to the rendering doctor about the interpretation of your MRI results, I'm not sure but he could be concerned about the interpretation of the results coming from an unqualified or prehaps a non NHS accountable person. Despite this he is your Primary care provider, responsible for your health and has a duty of care for you. A GP can make a referral to an NHS MRI unit or a Private MRI unit, most do both private and NHS work anyway. If an MRI detected an issue he is responsible for it's treatment unless he has referred you to a specialist consultant. I would personally submit a complain on these grounds but this could be stressful to pursue and not what you want so that is your own decision. If he is worried about its interpretation then he needs to refer you for a repeat MRI so a second accountable opinion is obtained.

If your GP is causing you problems then consider moving surgeries or requesting another doctor within the same surgery. You can move at any time by contacting another surgery directly and making a request (which they can turn down) or by contacting your local NHS trust HQ. Again you need to decide if it's right for you. Your employer is right to be concerned as you may not be fuffling your contract due to your illness and there are ways they can deal with this, company doctor or occupation health service are two of them. It's always good to have an understanding employer which you may have, if you keep communicating with them and they may take issue with your GP too if he is not managing your case properly or efficiently.

If your suffering effects of amitryptilyne then try not to worry, it's always worse for the first few days. The same drugs don't have the same side effects for all people so if you have an understanding GP he should be able to try a few other options to manage your pain and reduce the side effects. As regard to your specific condition I think it would explain most of your symptoms, it is probably sensitising your central nervous system so it has a larger pain response increasing things like substance P. Your amitryptilyne works by inhibiting your body's reuptake of serotonin which helps with pain and mood as this gets absorbed by nerve cells in the body, particularly when central sensitisation takes place. You could look into myofascial pain and neuropathic pain if you wanted to research the topic.

If your employer and GP are right for you then I'm sure you can work with them to everyone's benefit. So try not to worry too much, consider our advice and I do hope you progress to a happier and less painfull place in your life soon.

Anonymouse xxx
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Re: Hi there - I'm new! In need of advice :)

Postby Ariel » Sat Apr 28, 2012 3:23 pm

Thank you so much.

Luckily there are about 15 different GPs at this surgery!

The drugs are kicking in, but they are not helping with my wrist pain. What's upsetting me is that I show signs of arthritis, lupus, ME, fibro, candida, carpel tunnel, hypermobility.....and my GP doesn't really care. I know I have the rheumatologist appointment coming, just wish it came sooner rather than later.

I have to go back to work on Monday, although I'm scared what effect it will have on me.

So very frustrated.
xx
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Re: Hi there - I'm new! In need of advice :)

Postby anonymouse » Sat Apr 28, 2012 4:39 pm

I do appreciate why you are so frustrated, I can remember being at the same stage myself in 2007. I had symptoms of so many conditions it could have been anything at that point. GP's see so many people day in and day out so I don't think they tend to get enthusiastic about anything. Keep trying to get something sorted with your GP to control your pain although bare in mind they can hesitant to prescribe certain drugs without a diagnoses and pain clinic approval.

A Rhematologist is the right way to go so let that ease your mind a bit.

Good luck with your return to work and I hope it goes well.

Anonymouse
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Re: Hi there - I'm new! In need of advice :)

Postby FluppyPuffy » Sat Apr 28, 2012 10:03 pm

Ariel, have you looked into how you may be covered by the Equalities Act with you recently starting a new job?? If you are a member of a union, your rep should be able to advise you, or a Disability Employment Advisor at your local JobCentrePlus may be able to help you wit your return to work, as well as making your job as FM~friendly as it can be for you.

Hope Monday goes nice and gently for you :fingerscrossed: :fingerscrossed: :grouphug: :grouphug:
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Re: Hi there - I'm new! In need of advice :)

Postby stephenRT » Mon May 14, 2012 12:24 pm

Hi only just joined but picked up your item, first how are you now, I have dad Fribro for years and with a good GP at last, if you need to talk I am here, my first note s are under stephenRT and cover some of your problems

in short its very much up to you, you need to do the research tell the doctor what you would like to try and why, have you tried the Fibro test points yet? a must, how do you sleep? , see notes on chest pain

all the best

Steve
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Re: Hi there - I'm new! In need of advice :)

Postby Ariel » Thu May 17, 2012 7:41 pm

Hello all,

I'm seeing my rheumatologist on the 28th, but my blood tests showed that my rheumatoid factor was abnormally high, as well as my CRP and another one that I can't remember.

Now on amatryp, co-codamol and naproxen.

Early signs show severe rheumatoid arthritis (father and nan has it) and I'm now wearing a support on my right wrist. But pains are getting worse.

Every night I get home I collapse and sleep - just can't handle it all!!

thank you all for being so lovely, I shall keep you posted.
Ariel
x
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Re: Hi there - I'm new! In need of advice :)

Postby FluppyPuffy » Thu May 17, 2012 8:04 pm

Lots of :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: for you on the 28th Ariel, hopefully you will get some answers and suitable treatment sorted :goodluck2: :goodluck2: :goodluck2:
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Re: Hi there - I'm new! In need of advice :)

Postby anonymouse » Thu May 17, 2012 8:18 pm

Yes thank you for your update Ariel, in a way it's good news that your Rhematoid factor is high as it means you will get the treatment you need faster than some with Fibro that keep having negative tests. When I researched arthritis for my website I was very surprised to learn there are over 100 types of arthritis and there is a lot of information online about them. I think the website my Rhematologist gave me was arc.org so if your online there is plenty of information about to be found. I can only wish you well on the 28th and hope you respond well to treatment. My fathers wife has Rhematoid arthritis and when they find a combination of drugs that do work she does get a great deal of relief so take some encouragement from that. Also if the first few combinations, meds or treatments don't work keep positive, keep in the system, keep regular appointments and make sure you get treated well in the system.

Anonymouse
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