Fibromyalgia or MS or both- really feeling down

All your fibromyalgia experiences, questions and answers.

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Fibromyalgia or MS or both- really feeling down

Postby lauramath » Fri Aug 29, 2014 7:26 pm

Hi all,

I've quietly haunted the boards for a few years and posted a few times. I was finally diagnosed in 2009 and it was a long road to get there. I've been having more serious memory issues, exhaustion, eyes crossing to double vision, and my muscles in my legs feel tight around me. I have heard of the MS HUG and have this feeling from time to time. I have had calves so tight from doing nothing but walking to the office that they have torn and put me off my feet for weeks (when I worked...I have since resigned due to falling asleep on the job regularly).

Blahdy blah, you all know how the story goes don't you. ;-)

Anyway, I've been feeling more and more nervous, particularly upon reflection.

My grandmother, Aunt and Uncle all had palsy quite early in their lives. My aunt took numerous medications, including steroids from the time she was 40 (as long as I can remember). They said it wasn't Parkinsons, but never told me what it was. They were clumsy, had difficulty climbing stairs, and complained of feeling unwell a lot. My aunt died when she stopped taking her medications cold turkey and had a heart attack. She was on a very high dose of steroids.

Obviously it is likely all three of them had the same hereditary genetic disease and my family just behaved as if nothing was wrong, when clearly there was. I will never know irrifutably what the truth is, but I now wonder if having MS investigated on the basis of family history would be wise.

I'm so tired of being sick. I'm feeling very defeated lately. In my mind I have so many things I want to do and my body just wont cooperate. Its frustrating and I hide it from my family as much as I can and stay positive, yet they still think I moan alot about it. Oh my god, if they knew all the pain and exhaustion and nausea I don't tell them about. :(

It does feel good to vent this.

Laura
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Re: Fibromyalgia or MS or both- really feeling down

Postby major64 » Fri Aug 29, 2014 8:17 pm

I know how you feel. I hide as much as I can so when asked how I am I say not bad as they would not want to hear the truth. I hate asking people to do things for me but being single I have to. Like today asking my sister to hang my curtains that she washed on the line, then iron and hang. Just feel so useless at times but try to be positive .
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Re: Fibromyalgia or MS or both- really feeling down

Postby Sallyann » Fri Aug 29, 2014 8:19 pm

The short answer is that it's your choice.

The long answer is that I too am in a similar position in that I was also diagnosed with Fibro in 2009, and there is also a history of MS in my family. I have had an MRI scan which shows clear, however, my sister (who has had MS since 2007) has had numerous MRI's which also show clear. Hers was discovered almost by accident and only showed itself when she had to have a lumbar puncture (spinal tap). I am given to understand that as this is not common they (the NHS) are "reluctant to perform a lumbar puncture on the off-chance....." I was also informed my GP that if I thought the road to a Fibro diagnosis was long and hard, it would be even worse attempting to get (or not) a MS diagnosis. Helpful aren't they!?

Personally, at 52 years of age, I do not have physical or mental strength to be bothered to go through another lengthy battle to be heard and my condition investigated, and especially as the majority of drugs that my sister takes are the same as mine anyway. Having said that, it has been proven that if there is MS in your family your chance of having it has increased by 25%.

So, its back to the short answer again - it's up to you whether or not you choose to pursue it.

Hope this helps - and Good Luck
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Re: Fibromyalgia or MS or both- really feeling down

Postby Butterfly8588 » Fri Aug 29, 2014 8:23 pm

Hi Laura,
I'm really sorry you're feeling so low at the moment. Is there not anyone in your family that you can ask about your Aunt? Personally I think it would be very wise to speak to your dr about testing for MS, I don't think you can be to careful with these things.
I'm the same as you when it comes to talking about my problems, I try to hide it as best as I can. As you said, if only these people knew!
I really hope you feel better soon.

Gentle hugs xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Fibromyalgia or MS or both- really feeling down

Postby lauramath » Fri Aug 29, 2014 8:35 pm

Thanks for the responses. Its nice to know I'm not alone in this.

Sallyann, its a funny thing isn't it. Why the NHS would consider MS an 'off chance' in the case of a 52 yr old woman presenting symptoms with a family history of it. That would seem to me to be a pretty significant greater chance! Now, if you were fit as a fiddle and not having any sort of related symptoms, THEN it would be an 'off' chance.

Oh well. I guess really, there is somewhere in my mind that thinks someday I will have an answer and that will make it all better. But there isn't an answer and that is what I need to come to terms with. FM MS, ME, Lyme....it doesn't matter. It just is what it is. :cry:
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Re: Fibromyalgia or MS or both- really feeling down

Postby Butterfly8588 » Fri Aug 29, 2014 8:44 pm

lauramath wrote:Thanks for the responses. Its nice to know I'm not alone in this.

Sallyann, its a funny thing isn't it. Why the NHS would consider MS an 'off chance' in the case of a 52 yr old woman presenting symptoms with a family history of it. That would seem to me to be a pretty significant greater chance! Now, if you were fit as a fiddle and not having any sort of related symptoms, THEN it would be an 'off' chance.

Oh well. I guess really, there is somewhere in my mind that thinks someday I will have an answer and that will make it all better. But there isn't an answer and that is what I need to come to terms with. FM MS, ME, Lyme....it doesn't matter. It just is what it is. :cry:


Hi again Laura,

I just read your post and it does matter hun cos right now you have things happening to you you don't understand and it's frightening, especially with mystery illnesses in the family. I always liken it to when you meet someone new, you are wary of them until you are introduced and have a name. It's exactly the same, I was frightened about what was happening to me until I got my diagnosis xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Fibromyalgia or MS or both- really feeling down

Postby padders » Fri Aug 29, 2014 8:47 pm

Hi
Sorry to hear you are feeling down so much at the moment, but why you hate asking people for help or hiding your illness you are not going to get any better. You have to tell people and not be ashamed because you are ill. I am sure your sister didn't mind helping you today. You have no reason to be ashamed or embarrassed you are ill. I don't hide away I tell people the truth and ask for help when needed. If they are true friends they will understand and be there for you. You may be making yourself worse due to stressing out asking for help.
My limbs like yours do exactly the same but I take 150 mg of amitripyline each night which helps, i still get it but nowhere near as bad.
Before my diagnosis of fibro I went for a MRI and it came back showing things so I was sent to a neurologist who didn't think it was MS but to make sure he offered me a lumber puncture which I took so to deffinatley rule it out. It was the worst thing I have ever had done as I had a bloody junior Dr and he had 30 attempts at getting the fluid!! 1 and a half hours I endured having them bloody needles put in and out!! Found out afterwards I was his first live patient!! But hand on heart I would go through it all again to be certain that it wasn't MS if I hadn't been diagnosed with fibro.
But you are the only one that can decide if you want to pursue this avenue or not. Think hard will it make a difference to your life knowing if it was or was not MS or your treatment or how you are feeling? At the time I had it done I hadn't been diagnosed with anything so that was a great persuader for me to have it done.
Please try and stop feeling guilty and hiding it away from your family, how will they no you are ill and need help if you don't tell them. As I said earlier all the stress you are feeling will make your symptoms much worse whatever it is.
Maybe write down the pros and cons of pursuing further investigations.
Please stop worrying and look after yourself x
Lisa x
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Re: Fibromyalgia or MS or both- really feeling down

Postby robbiecramp » Fri Aug 29, 2014 9:12 pm

Hi Laura I was diagnosed January this year and do have a good GP who knew my family history as did tell him about my mum who had fibro and MS along with other things. As things have developed with new things cramps and spasms among other things he has now decided to send me to a neurologist to get a final answer although he says he things he is right and it is only fibro but he has taken his time and I think if you feel you warrant a test tell him

Good Luck and try keep smiling.

Robbie
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Re: Fibromyalgia or MS or both- really feeling down

Postby migrembe » Fri Aug 29, 2014 9:40 pm

My MRI for MS was clear but it didn't stop the fact that several times a day and several days a week i lose the use of half my body.

You don't say what medication you are on, but some of the medication being used for Fibromyalgia were not made to do so and can cause very odd and disabling side effects.
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Re: Fibromyalgia or MS or both- really feeling down

Postby lauramath » Fri Aug 29, 2014 10:37 pm

Oh boy. The list of medications:

Gabapentin 600mg 3 times a day
Nefopam 2tablets 3x per day
tramadol 2 50mg 3 x per day
Cocodamol 30/500 1tab 3x per day
Ibuprofen 400mg 3x per day
Citalopram 50mg bedtime
Amitryptline - 25mg at bed
Omeprazole - 1 in morning

...see..not much... :shock:

I have been taking these for the past 5 years (except the citalopram and amitrypline for 15 years, the omeprazole a few months)
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Re: Fibromyalgia or MS or both- really feeling down

Postby rich44 » Fri Aug 29, 2014 10:47 pm

Do you find those nefopam do anything for you?
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Re: Fibromyalgia or MS or both- really feeling down

Postby mags3pets » Sat Aug 30, 2014 12:13 am

Its hard not to feel down when you're ill and especially when you don't know what's wrong. I had so many tests last year and it wasn't until March of this year that I was diagnosed with sjogren's syndrome. Also have arthritis, anaemia, asthma, depression, hiatus hernia, insomnia, migraine, oesophagitis, PBC, Raynauds, scleroderma and sciatica. So if its not one thing its the other. I take much medication for itvall and a lot of that makes me drowsy:-
Adalat 9/day
Arcoxia 90
Co-codamol 15/500 x 8/day
Diazepam 2/day
Galfer
Hydrochloquine
Hydrocortisone
Lanzoporole
Pizotifen
Prothydine
Sumatriptan
Tramadol
Ursodeoxycholic acid
Zolpidem

Feel like I rattle when I move.

I hope you get a diagnosis so that you can get appropriate treatment. All the best x
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Re: Fibromyalgia or MS or both- really feeling down

Postby stephdawn » Sat Aug 30, 2014 5:11 am

Hi lauramath it's good to hear from you. I was diagnosed with fibro about 14yrs ago. Of course then you were just pumped with pain killers and anti-depressants and was told it was all in your head! :yikes: I'm happy to say that things have changed and there is so much information available via the internet. I have a fantastic DR who I've only been with 2 1/2yrs now and all the dr's in the surgery have knowledge on our condition. He has referred me to the pain clinic and I've also seen a fibro physio. I'm on at least 26 different meds a day. I am also learning to try and pace myself which is very difficult :yikes: as I get so tired very quickly :sleep: . If ever you want to chat and that also goes to anyone on here my ears are always here to listen . Take care and hugs coming to you all :lol:
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