Why is no one helping?

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Why is no one helping?

Postby Elliesmink » Thu Apr 16, 2015 12:42 am

Hi, this is my first post so I'll do a quick introduction.

I've only recently been diagnosed but had symptoms for at least 9 months, possibly longer. I'm 35, I have three kids, 4, 2 and 2, a job and not an awful lot of time to rest!

I've been experiencing a wide range of symptoms, the worst of which is pain. I have general pain throughout the day, primarily in my lower back and hips but everywhere else too. Worst of all is on a morning where my back goes into spasm and I can't move without agonising pain that lasts for two to three hours and is made excruciatingly worse every time I move but is too painful for me to not move.

I also have muscle weakness at times in my arms and legs and hands. This is particularly bad at night or after periods of even mild exertion. Migraines once or twice a week that are crippling, fogginess and inability to concentrate or remember anything. Jaw and facial pain that can also be quite bad a times. Cramp in all areas of my body including my tongue (?) and inability to sleep.

Despite all this, I am not depressed, I'm pretty fed up admittedly but I get up every day and play with my kids as much as I can. I'm trying to keep focused on getting back to my life as quickly as possible.

So my question is, what can I do to get someone to help me? I keep going back and forth to the GPs but I see different ones and they all have different ideas of what to do. So far I've been on amitryptaline for a couple of months, then off it and on gabapentin for three weeks then off that and back on amitryptaline for a week and then off that again and they want me to start an antidepressent! There is no continuity and I'm still waiting for an appointment at a fibro clinic. I'm just sat in pain day in and day out and told to give it six weeks!!

I'm off work and I need to get back asap. What can I do?
Last edited by FluppyPuffy on Thu Apr 16, 2015 8:44 am, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Why is no one helping?

Postby FluppyPuffy » Thu Apr 16, 2015 9:14 am

:welcome: to our little FibroFamily Elliesmink :cow-wave: :cow-wave: :cow-wave:

Sorry to hear how things are for you at the moment, having no~one seemingly to help you just compounds and intensifies what you're already feeling and dealing with. Have you tried to make an appt with a specific GP at all, or is it a case of just accepting whoever is available to see at that current time??? It might be worth enquiring about whether there is a particular GP at your surgery who has an interest in conditions such as FM, and if there is, ask for an appt tp see them specifically.

Wrt meds, there are a number of different types used to try and ease the symptoms we experience, incl anti~ds. These are prescribed because, as well as working on depression, they have been found to help other issues as well. Amitriptyline is an anti~d that has also been found to help with sleep and pain issues in conditions like FM, so it's possible that the other anti~d you were offered may have been suggested for this reason. If you found the Amitriptyline helpful, it may be worth asking about an alternative to it, such as Nortriptyline. It works in the same way as Amitriptyline does, but is said to be better tolerated and have fewer side effects.

Reading thru some of the other things you've tried, some of them need a decent amount of time to build up in your system. The one that really jumped out to me with this was Gabapentin. Whilst for some it can take around a month for things to improve, for others it can take as long as 3 months for benefits to be felt. During this time, the dosage would usually be increased as well, all of which can help how you feel.

For your appt with the Fibro Clinic, you could try contacting them to see whereabouts you are in the system. If you are in a position to take an appt at short notice, it could be worth mentioning as a cancellation could come up.

You'll find that a lot of the other things you are experiencing are things that a good number of us have also encountered along the way in our FibroQuests, so have a bit of a looky and a read of some of the posts when you have a mo, there may be some suggestion for you to look into or try out that could prove helpful to you.

Anything else that you may be wondering about, don't be afraid to ask about them as someone may have some useful advice for you :cow-wave: :cow-wave: :cow-wave:
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Re: Why is no one helping?

Postby Queenie_70 » Thu Apr 16, 2015 10:31 am

Hi ElliesMink,

In regards to the back pain in the morning, have you tried a simple heating pad or hot water bottle at night so that it releases the muscles so they are not so tight in the morning???

I also take about three hours to get going in the day so I always book afternoon appointments. Having three children at the ages they are I can only sympathize about the need to HAVE to get up and get going, so you don't have the choice to be slow.

Many anti-depressants were found to have pain reducing properties for nerve pain because of the way that they work with the brains receptors. You don't have to be completely numb from them, for the benefits. It might be worth chatting about them again.

We all have to find what works for us, what "cocktail" keeps us going, but doesn't make us a zombie, plus many of us try different tricks and share if they work.

I stand by the idea of heat for your back...this will also help the hips, because the tightness in the back won't pinch off any nerves to cause pain lower.

Good luck.

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Re: Why is no one helping?

Postby Elliesmink » Thu Apr 16, 2015 11:52 am

Thanks for the replies.
I've managed to speak to a good dr this morning and he's told me to carry on with the amitryptaline for now and booked me in to see him next week. Now I can hopefully see him each time. I'm going to try calling the clinic as well, thanks.
I've tried heat and it does help with the general pain. I have to have two hot water bottles with me all day at the moment as I get very cold and painful and I have them at night a long with an electric blanket on high. The heat helps the pain so I can get to sleep easier but if I roll on to my back in the night my back locks and I still get the spasms. I've tried propping myself with pillows but I move around a lot when I'm asleep and still end up on my back. I've tried sleeping on the sofa and that helped at first but it's happening there now too. It's definitely happening more often too and started last night just from sitting for a while.
It all goes through my spine where I can't move my limbs even a millimetre without excruciating pain. It's really hard to deal with at the moment so any tips would be great. :(
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Re: Why is no one helping?

Postby SchroedingersCat » Thu Apr 16, 2015 12:11 pm

The only thing I've found that helps with pain and seizing up is moving. Seriously. I don't have any medication other than over the counter stuff, so moving more, heat, and a decent night's sleep are the only weapons in my arsenal. And yes, I know it hurts to move, but staying still hurts more.
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Re: Why is no one helping?

Postby Zia2014 » Thu Apr 16, 2015 5:47 pm

As Fluppy says, antidepressants are often suggested for their pain relieving qualities - usually they are 'old' ADs and not even really used for depression anymore.

For me, I got a final diagnosis from a Rheumatologist, which then allowed me to be referred to the Pain Clinic at my local hospital. I did research to find this clinic by looking up my hospital department list and going from there, then asking my GP for the referral as he had no idea it existed!

The Pain Clinic have enabled me to attend hydrotherapy, tai chi, a pain management programme and see a CBT therapist. They also have a physio within the department. These facilities vary between different places, but your best bet is to start doing some research into what exists in your local Trust and ask for referrals.

Btw I am a similar age, with a year of symptoms and was diagnosed in October. So although I have no kids I just wanted to let you know, you are not alone!
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