Multiple Sclerosis and Fibromyalgia - Fibromyalgia Acti...

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Multiple Sclerosis and Fibromyalgia

Christina1958 profile image
14 Replies

Does anyone here have MS and Fibromyalgia. I have had Fibro for 15 years and have just been MS diagnosed.

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Christina1958
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14 Replies
MarkatHMSTC profile image
MarkatHMSTC

Hello Christina1958,

I don't have MS or FM. But I do manage an MS Therapy Centre that helps a lot of people with MS and increasing numbers with ME & FM. Do you know that there are more than 50 MS Therapy Centres around the UK. They are all local charities and many, like mine, treat a wide range of conditions, not just MS. We mostly focus on Physio, Physio led exercise programmes and Hyperbaric Oxygen Therapy,sometimes they have a variety of complementary therapies too. You can check if there is a centre like this near you at msntc.org.uk/centresearch.php Very best wishes,

Mark Boscher, Hertfordshire Multiple Sclerosis Therapy Centre

Hartleyhare2 profile image
Hartleyhare2 in reply to MarkatHMSTC

HI Mark,

I have just visited the MS link and think it fantastic you provide this to MS sufferers. To have access to something like this as someone with Fibromygelia would be a dream come true. I often feel we are a forgotten illness or written off by the health system. Thank you so much for this information.

Many thanks

Patrick

MarkatHMSTC profile image
MarkatHMSTC in reply to Hartleyhare2

Hi Patrick,

People with FM are very welcome to tap in to all that my MS Therapy Centre offers (Physio/Exercise programmes tailored for various medical conditions/ Hyperbaric Oxygen Therapy/ complementary therapies). So I'd say to anyone with FM who does not have MS - try your local MS Therapy Centre because plenty (but not all) are open to people with a wide range of conditions .... including FM, ME/CFS and Lupus. So, its always worth a phone call to the MS Therapy centre nearest to you. All the best, Mark at Hertfordshire Multiple Sclerosis Therapy Centre

Christina1958 profile image
Christina1958 in reply to MarkatHMSTC

Mark thank you very much.

TheAuthor profile image
TheAuthor

I can easily imagine that some MS sufferers also have Fibro, and that it is difficult to get a Fibro diagnosis after getting an MS diagnosis. To get an MS diagnosis you need an MRI to scan for lesions on the brain and /or upper spinal cord, and if you have undergone this and not had any lesions found then you will be told that you do not have MS. Therefore there could be a chance that you have Fibro? So it has to be a MS diagnosis prior to a Fibro one. As if you are told that you have Fibro and then at a later date have an MRI and lesions are present, then I can imagine that every symptom that you have will be labelled MS? I am not a doctor so I cannot say that they are not either?

My wife has Primary Progressive MS so I have been through all of this with her. The symptoms can be quite similar depending on the type of MS that you have as there are three kinds, Remitting, Secondary Progressive and Primary Progressive. Many of the medications are also the same such as Pregabalin, Gabapentin and Duloxetine to mention a few.

All my hopes and dreams for you

Ken

PandaShellenaFay profile image
PandaShellenaFay

Multiplescrerose or so, no! But I know all about Fibromyalgia since I have it since 2007. Try Guaifensine!

Christina1958 profile image
Christina1958 in reply to PandaShellenaFay

Thank you.

MariLiz profile image
MariLiz

Hi Christina, so very sorry to hear about your diagnosis of MS. Do you know if your levels of B12 have been tested? I am asking because low B12 can cause severe nerve damage, to the myelin sheath itself. It can be seen to mimic MS due to this damage. If you want to read more try the Pernicious Anaemia website, or Martyn's Hoopers book, Pernicious Anaemia, The Forgotten Disease. My very best wishes to you. MariLiz

Christina1958 profile image
Christina1958 in reply to MariLiz

No not tested as yet. Thank you very much. I will look at the website.

fenbadger profile image
fenbadger

interesting comments. No I don't have them side by side, but considering their similarity, I have fibro, my daughter has MS. Might there be a connection?

Christina1958 profile image
Christina1958 in reply to fenbadger

I think that could be the case in my family. For 4 generations we have had fibromyalgia/MS symptoms.

secretldy profile image
secretldy

i read that you can have symptoms like people with MS have.

Hartleyhare2 profile image
Hartleyhare2

It was explained to me that fibromyalgia, CFS, ME and MS are all part of a broad spectrum and that many of the symptoms overlap. I think the medical obsession with labelling an illness can often be to the detriment of the treatment of the patient.

Whatever illness, I hope you are all getting the help you need. If not manage it yourself and start telling Doctors what you need, why and examples of how it would improve your life. We all love our much abused NHS but if your not getting the help you need time to break out the assertiveness or find a group that can help.

Best wishes

Patrick

Christina1958 profile image
Christina1958 in reply to Hartleyhare2

Thank you very much Patrick.

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