Fibromyalgia

[sylvi]

Here i am after another trip to the hospital. Where do i start thats the question, 12mths ago or 2yrs ago when i had knee replaced.

Due to arthiritis 2yrs ago i had knee replacement. After 8weeks i felt it wasn't right. Kept going back to hospital, then had to have it manipulated. Last year had to have ligaments stitched back. Three weeks in plaster and then had to wear a brace for months on end. Saw surgeon earlier this year and he said then that if he did another operation it would end up witha stiff leg. Didn't want that.

Then in June i think i had a case of diverticulitis and i was taken off diclofenic and i seem to have gone downhill fast. I've been saying for months that nobody was listening to me. Each department would treat the knee, eyes, etc, but nobody would treat me. Yet i was still in pain,tired, moody,fatigued,ached allover. Then about a month ago i fell off my scooter and knocked myself about. I know i should have taken more water with it, wished that i did drink i probally wouldn't have hurt myself. Last week i was in bed in pain when my rheumy nurse rang me and i was in floods of tears as i was in so much pain. She said she would get back to me. I think then she had some idea. I then had ra secetary ring me with emergency appointment for today. My doctor was on holiday and she said i would be seeing the other doc. appt was for 2pm. got out of there at 4pm.

The consultant came in after having a long chat with nurse. He said that i was in pain, its like a light switch hasn't been turned off. He went on to explain everything to me. He made a lot of sense i can tell you. I had to do a little test for him. It shows i'm depressed and very anxious, which i did already know about as i'm waiting for counselling. I have now got to make appointment to see my gp as he is going to faxed him today and i'm to be given fresh set of drugs to help me. I've got to see someone in pain clinic. It turns out to be fibromyalgia. At least i know what i'm up against now. Half the battle has been for someone to listen to me. I think my ra nurse had a good idea what was wrong with me.

So there you have it, i'm not imagining it, now i can concentrate on getting it fixed. I know it won't be that simple but at least i can get clued up on it.

Anybody got any info about it i would be grateful, if you need my email or address let me know. I know you lovely people on here will be a font of information, so i'll thank you now.

Thanks for listening to me.

Sylvia.

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Hi Sylvi, I know it's not nice for you but at least you have a proper diagnosis now and can hopefully move forward in some way. I know you have a long way to go but perhaps others on here who suffer with fibro can give you the information/support you need.

I would imagine they will refer you to the Pain management clinic to help you too.

Good on your for persevering, it's something I have always said to people on here, follow your gut instinct if you feel something isn't right get someone to listen.

Take care Sylvi

mand xx

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Hi I have ra and fibromyalgia it can be very painful and v tiring indeed.. im still waiting for pain management it will be two years soon.. my consultant a bit absent minded thats the polite version. when I saw her in june she admiited that when I saw her in december she had forgot to refer me!!, and when i was first diagnosed the pain management clinic was closed to new patients.. the rest and pacing applies, gentle exercise if possible,.. and drugs such as amitriptyline, gabapentin are used and a few others.. these are usually takenat night!. there are books/ leaflets around on the condition.. arc and arthritis care and nras will have some info

Alison xx

[sylvi]

thank you ladies,

I've to ring gps today about amytriptyline. Consultant is going to contact gp by today, so at least i can start medication. Pain clinic is on the cards, but what frustrates me is that you have to keep on at people to listen to you.

I've had a bad night. Only had 3hrs sleep, and i ache not going to worry much as now i know its not all in my head. Will take more painkillers a bit later on and hopefully they will ease the pain.

Sylvia. xx

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Sylvi,

I'm really sorry to hear that you have another condition for the mix; I can't imagine how dispiriting that must be.

You asked me in your email to us to post information on fibromyalgia which is why I've stepped in and added my post here.

I'd love to be able to tell you that we have another HealthUnlocked group that could connect you to more support and direct wisdom from other patients (like I could for one of your community members, ADMP who realised she had scleroderma). Unfortunately, the fibromyalgia groups I've approached so far aren't currently interested in setting up with us [no, I don't know why either!].

Here are two UK charities working with the condition though and I'm sure they'll have some good information for you. You've probably found them already with the power of Google but in case not:

fibromyalgia-associationuk....

ukfibromyalgia.com/index.html

I do wish you well.

Kind regards,

Katie

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Hi Sylvi

Sorry to hear of the diagnosis, but it is strange that it does bring relief doesn't it because it will explain how you have been feeling, and now you have "something" to tackle. Thank goodness it has been sorted out for you.

There are quite a few people on here with Fibro as well as RA and I am sure you will get lots of help from them.

Take care

Julie xxx

[Victoria-NRAS Partner Moderator NRAS]

Hi Sylvi

Sorry to hear about this latest diagnosis, although I am sure it will explain a lot and in many ways be a relief, as now you know what you're dealing with. As Katie B has mentioned, UK Fibromyalgia are probably the main UK charity, but following on from Summer's suggestions:

What used to be 'ARC' (Arthritis Research Campaign) is now ARUK (Arthritis Research UK). They have good information on this:

arthritisresearchuk.org/art...

Arthritis Care can also be helpful in terms of information and helpline (0808 8004050):

arthritiscare.org.uk/AboutA...

Hope these links along with everyone else's suggestions will be helpful.

Kind regards

Vicky Backhurst

Helpline & Information Coordinator

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Hi sylvi,

sorry to hear your new diagnosis I too have both fibromaylgia and ra..

I know I'm still struggling to find the correct medication to help cope with the extra pain fatigue etc caused from both

I've just seen your other blog about the meds you have been given, hope they help I take amytriptiline and gabapentin I did find the gabapentin took me around three months to get used to a first it made my fatigue loads worse. but hang in there it gets better.

I still really struggle with sleep hence commenting at this time, I find I can't plan morning things as much anymore I never seem to be able to move till after lunch now, hope you start to feel better on your meds soon x

take care

you can always message me if you need a chat

Julie x x