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The UKFibromyalgia Forums • View topic - Fibromyalgia with Tourette Syndrome



Fibromyalgia with Tourette Syndrome

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Fibromyalgia with Tourette Syndrome

Postby frankie23 » Fri Jun 13, 2014 1:10 am

Hey!

This is my first post here and I have only recently been diagnosed with fibromyalgia. I'm hoping to be able to speak to people who might be able to help me.
I shall give a brief back story...

I was diagnosed with Complex Motor Tics with mild vocal tics (a form of tourette's) in October 2013. Then in around February/March this year I was also diagnosed with Fibromyalgia. So far I have tried Naproxen and Amitrypiline for the fibromyalgia however neither have been suitable; I seem to be sensitive to medications that can cause fatigue/drowsiness. I was prescribed Amitrypiline at 10mg once a day (a very low dose) to start of with, however this would cause me to sleep for up to 17 hours a day, every day and when I wasn't sleeping I wouldn't be so tired I'd feel like a zombie. My doctor mentioned a couple of other medications however she said that those were the ones that had been known to cause tiredness, and that the Amitrypiline wasn't supposed to cause that much tiredness. Safe to say I didn't bother trying the other two medications! Equally the Naproxen knocked me out most of the time. Neither of these medications helped with the pain.

I find that my tics affect my fibromyalgia; I get moderate tics that cause me to twitch, mainly in my hands and face. I also have jerking motions with my head and arms which put pressure on my tendons/ligaments and muscles. My tics can cause me to injure myself because I also have hypermobility which means I am more likely to dislocate my fingers (specifically) and strain various ligaments because they are weaker than normal. Obviously because of having fibromyalgia the pain can be very bad. Every night I go to bed with aching muscles and joints and I get very poor quality sleep because of this.

I am 21 years old and have just finished my 2nd year at university but honestly I am so worried about my final year, particularly because the cold weather makes me feel worse and the course I am on requires me to be in uni from 9-5 monday to friday, and I have a part time job. I have no social life and my friends and family don't really get how bad I feel most of the time. I feel like most of the time they think I'm lazy or just whining; it's incredibly frustrating.

Currently I feel completely hopeless. If anyone has any suggestions of medication that won't knock me out or another kind of treatment that might help with the pain then I would really appreciate any information any of you could give me.

Thanks!
(sorry for the long post!)
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Re: Fibromyalgia with Tourette Syndrome

Postby whoami » Fri Jun 13, 2014 3:12 am

Welcome. Please don't be sorry about your post. We are here to listen.

I would like to say I don't think it would be right for any of us to recommend medication, over the counter even. You have fibro as well as tourettes and we are not qualified to make that call. There are many different meds to try as well as treatments. Some find physio helps. Others may find mild exercise, swimming, tens machines, acupuncture to name a few. We are all different and our meds and treatments vary.

I can only imagine how exhausting it is for you with both conditions. My friends son has tourettes and he wears himself and her out. Make sure you see your Dr soon and explain how you feel. Try not to stop any medication without consulting your Dr first. It can be harmful to just stop some.

I hope you find some relief soon.
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Re: Fibromyalgia with Tourette Syndrome

Postby FluppyPuffy » Fri Jun 13, 2014 8:44 am

:welcome: to our FibroFamily Frankie :cow-wave: :cow-wave: :cow-wave:

I've moved you into here with this being your intro post as it's a more suitable board, and you won't find yourself dropping down into the deepest, darkest depths of the forum where the Dust Bunnies live quite as quickly as you would have done where you had originally posted.

It's not unusual for someone with FM to find that they have sensitivities when it comes to meds. Plus not all meds help everyone, and as we are affected very differently by FM, it can take a while to find the right cocktail for you. Of the med~types used to try and manage FM, there tends to be several different ones/brands of each type, so if a particular doesn't help, there's a chance a different one might.

What your doc said about Amitriptyline supposedly not causing so much tiredness isn't quite the case for some. It is well known for causing awful morning~after zombification, and there are some who, even its lowest dose, have found themselves experiencing similar effects to what you have described. An alternative to Amitriptyline is Nortriptyline, and is quite often tried when Amitriptyline isn't helpful. It's a sister~med of Amitriptyline, so works in the same way, helping with pain and sleep issues. Compared to Amitriptyline tho, it is said to have fewer side effects, and be better tolerated. It might be worth asking your GP about it and whether it would be suitable for you to try. Naproxen, whilst offering some pain~killing benefits, is primarily used as an anti~inflamm med, like Nuerofen/Ibuprofen, only stronger, and doesn't always help where FM is concerned. Have you asked your GP about something else to help with your pain levels, such as Co~codamol. It comes in different strengths and can be quite effective for some. Maybe another item to add to your list of things to ask your GP about being suitable for you to try????

Have you spoken to your Disability Adviser at Uni wrt your dx??? If not, then it would be wise to do so. Once your tutors etc know about the problems you have with FM, things cn be put in place to try and help you carry on with your studies with your conditions taken into consideration. This could be extra time for completing work, access to additional equipment for taking notes/recording information etc. They should look at the areas where you are having difficulties and help devise a personal plan for you.

You really do need to speak to your friends and folks about FM and how it is affecting you. If they don't know about it, then they can't try to understand or do anything to help you. It may be difficult to do at first, but one you get things flowing it does get easier.

I understand how hopeless things seem at the moment, it's how most of us have felt at some point, esp in the early days after being told we have FM. However things can and do get brighter as you find out more about the condition and how it affects you. You could start by having a looky on the board, as well as for some ideas to try out, and to ask your GP about.

Anything else you want to know, just ask, it doesn't usually take too long for someone to :penguin: :penguin: :penguin: :penguin: :penguin: along with a reply. And don't worry too much about the length of posts, we've all made long and epic ones along the way, and still do at times :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:


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Re: Fibromyalgia with Tourette Syndrome

Postby MichelleJ » Fri Jun 13, 2014 12:15 pm

Hello and welcome to the forum. Like the others have said everyone here is always willing to help. We're all in the same boat so help each other.

I can't comment on your Tourette's as I know very little about it. But I'm happy to share what's worked for me meds/treatment wise for my fibro/m.e. I took amitriptyline for almost 4 years. I was a complete zombie most of hat time. I felt its pain relief and ability to help me sleep at night was wearing off so asked to swap. They changed me onto nortriptyline, a sister drug of amitriptyline. I have had very few side effects with it, am not a constant zombie with it, and it really helps me sleep and with my pain yet can still get up in the mornings. So maybe ask about trying this, see if you find the same. Pain killers wise I've been on various strengths of tramadol, co-codamol and paracetamol and codeine separate as they can work better not combined. I'm currently on a drug called tapentadol which has less side effects and has proven very effective for me. I got hold of this through the pain clinic consultant.

As well as these they sometimes prescribe things like lyrica, gabapentin and duloxetine, all of which can help with pain in fibro. For me, lyrica didn't work, gabapentin did but also gained 4 stone on it, duloxetine was great, only came off that when I went on tapentadol as that drug does the same job as duloxetine aswell as being a pain killer. But everyone's different so its a case of work with your dr to see what works. Maybe google all these, learn about them and then take a print out with you to see your g.p.

Apart from meds I have found acupuncture very beneficial (u can have limited sessions on the nhs of this). Recently I began physio again and this time it is working for me and I am getting stronger and able to do more. Graded exercise is the key though, don't do too much too soon. Also I swim regularly and use an exercise bike daily. This has all been built up over a long period of time. I should say I am severely affected and have to use a wheelchair outdoors most of the time but have still managed to start and maintain and exercise programme. Just tiny bits at a time. Also google pacing if you don't already do it as its key to managing this condition. Maybe ask to attend a pain management course as they can be excellent in providing you with the tools to manage your pain. Finally, I find the heat helps me immensely, especially abroad. I just got back from gran canaria, my first trip abroad in 10 years. I took my carer with me so I could manage it. But whilst there I was totally symptom free from both my m.e and fibro and have to stay am still a lot better now I'm home. I need to look into what options may be available to me to get heat exposure. Poss a uv lamp or something but not sure if that would help me or not so need to see dr.

Anyway, hope that gives you something to work with and don't be afraid to go to your g.p with these options and put them to him or her. X
Dx with fibromyalgia m.e/Cfs and asthma
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Re: Fibromyalgia with Tourette Syndrome

Postby MichelleJ » Fri Jun 13, 2014 12:32 pm

Just wanted to add, when you think of exercise with fibromyalgia you need to think of it as more than actual "exercise". What I mean is healthy people think of exercise and think of swimming, walking, runnig, going to the gym etc. with this u need to think of anything that requires physical movement. So having a shower, getting dressed, making dinner, washing up, cleaning, folding the laundry are all classed as exercise. Even basic stretches, just opening and closing your hands, moving your legs on the bed, sitting up, standing up. This is all exercise. For me this is where my exercise programme began. Any movement atall =exercise. Therefore almost everyone with this condition, even those bed bound came manage some type of exercise. Even if its just wriggling their fingers and toes.

Wanted to share that with you as I don't know how severely u suffer with this or what your limitations are and I know for me the word exercise terrified me as I was stuck in bed and in a wheelchair and so thought I couldn't exercise but when I realised everything counted, even walking to the loo, I was able to begin to make progress.
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