Increasing pain: Hi everyone I haven't... - Fibromyalgia Acti...

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Increasing pain

JanetM profile image
22 Replies

Hi everyone

I haven't been on here in a while due to studying and not having time for anything else.

I was diagnosed with Fibromyalgia 8 years ago, but have had it for 17 years. It took a while for them to diagnose. Since 2009, I have been on Amitrypteline at night. I started on 25mg and now up to 50mg a night. My GP is not keen for me to take more than that, although I am allowed to increase it when I have flare ups. I am also on Paracetamol 1000mg and Ibuprofen 800mg 3-4 times a day. It doesn't take away the pain, but does dull it.

Alongside 'normal' Fibro pain, I get odd flare ups in particular joints which seem to ease on their own. Nothing shows up when they check my inflammatory markers. A few weeks ago, the back of my right knee started giving me trouble, so much so that I have at times had to walk with a stick. I saw the GP (not my normal one) and he gave me Codeine and Naproxen to take alongside the other pain relief. Sadly, they have not touched the pain and now I am feeling increasingly less mobile as my whole body is now stiff and in pain, even when I am just sitting down. GP also told me to lose weight, which I am addressing, but that doesn't help me in the short term.

I am planning to go back to my own GP when I can get an appointment with him. Does anyone have any suggestions for pain relief that actually works? There has been no obvious reason for this increase in pain levels, apart from that I have had a lot of stress with getting essays finished for my studies. However, this has never been a huge factor in the past and I have been good about resting at regular intervals when needed. I am not sleeping well at the moment because of the knee and other body pain, so I know that is not helpful.

Any advice before I go back to my GP would be appreciated.

Thank you everyone. I hope you are all managing your pain levels better than I am.

Janet xx

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JanetM
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22 Replies
Sorebones profile image
Sorebones

My rheumatologist has put me on 100mg of Amitriptylene. Makes a difference at that dose. I started on 10mg and it was upped by 10mg until I got relief. Not sure if I'm getting more sleep or if I no longer notice I'm waking up lol. I'm certainly not going to the loo half a dozen times during the night any more. And I thought it was a bladder problem lol.

Only other thing to suggest is heat. Always helps me if applied to affected area 🐸

JanetM profile image
JanetM in reply to Sorebones

Thank you Sorebones. I will see if he will be prepared to try me on that higher dose. Heat does help, so I probably need to get some more of that. xx

Sorebones profile image
Sorebones in reply to JanetM

A hot water bottle under the knees helps. Shame you can't move around with it though. They have yet to come up with a decent knee heat wrap..... Now there's a business opportunity lol.

My knees can get really bad. I have osteoarthritis in both and frequently wake up in pain with them during the night. Nothing seems to help apart from getting up. I've been waking up with a pain right down the back of my knees for the last couple of weeks. That's new.

Have you had your knees xrayed? Might be worth doing if not. 🐸

JanetM profile image
JanetM in reply to Sorebones

Knees haven't been x-rayed yet, but I think that will be the next thing to do, as they both click and creak as well as having pain. I hope your knees improve quickly. Hot water bottle behind the knee seems like a good thing to try too. xxx

Sorebones profile image
Sorebones in reply to JanetM

Worth doing. I'm looking at replacement in the not too distant future, depends if they will do it before I'm 60. I've a few painful years in front if not. I got Ibugel Forte prescribed for my knees and it really helped!! Not a long term solution but anything that could ease it?? It is only on prescription though. Try it 🐸

rosie-2015 profile image
rosie-2015 in reply to Sorebones

Hi sorebones I'm sorry about your knees, i know you get neck and shoulder pain, have you tried the hot water bottle for neck and shoulder pain i'm sure you could wrap it around your knees, i hope this helps xx rosie

Sorebones profile image
Sorebones in reply to rosie-2015

A scarf could do the trick lol 🐸

rosie-2015 profile image
rosie-2015 in reply to Sorebones

The hot water bottle for the neck is circular it wraps round the neck, it's great for the front of the neck, that's where the pain is worse for me 😣

Sorebones profile image
Sorebones in reply to rosie-2015

That's a bit different! Have you had your thyroid tested? Or is it related to your jaw? Thermacare do neck heat wraps that you could wear either way. Stays cosy for 12 hours. I've had one on my back today as I was in the car for 5 hours. Makes a difference 🐸

rosie-2015 profile image
rosie-2015 in reply to Sorebones

According to my gp the neck pain is caused by my cervical spondylitis and the pain at the front and side of my neck and scapula are caused by the fibro. I'm passed caring about the cause I'd just like something for the pain, your advice about thermacare sound's positive I'll have to try it thank you for getting back to me xx rosie 😊

Sorebones profile image
Sorebones in reply to rosie-2015

I can't blame you there! It's impossible at times to figure out which nastie is causing hell. I suppose I try to figure it out so I know if it will move or not. I find my Fibro pain shifts position. I've worn through 2 neck discs and have had the cortisone injections into the vertebrae. On top of the pain I have problems holding my head up at times. Had spondylitis for years! If you have found a way to help the heavy head please let me know. Hope you manage a comfortable day 🤗🐸

Sorebones profile image
Sorebones in reply to Sorebones

PS if you haven't seen a neurosurgeon ask to be referred! An MRI explains so much and may help you get some relief. Most neurology depts have specialist pain clinics. 🐸

rosie-2015 profile image
rosie-2015 in reply to Sorebones

Hi sorebones I'm sorry I've not got an answer to help with holding our head up, sometimes i feel like the noddy dog on the back of the car lol i have essential tremour and it gets worse when I'm stressed. I asked my gp for a scan but she tried to get me an scan but she said it wasn't allowing her to do it, she said she would refer me to a specialist but i said no because i wouldn't want surgery on my spine, again thanks for getting back to me i hope you have as pain free a day as possible xx rosie 😁

Sorebones profile image
Sorebones in reply to rosie-2015

Just because you see a neurosurgeon doesn't mean that you need to go through surgery. You will still have a chance to decline. But you could get the MRI and pain relief. We all have our own limits so I understand if that's a step too far for you. Know what you mean about the nodding dog though! What a great way of putting it. I shall adopt that if you don't mind. Hope you are doing ok today 🐸

rosie-2015 profile image
rosie-2015 in reply to Sorebones

Hi thanks again for the advice I'm going to take it, i have an appointment at the gp on Friday so I will ask her then, i'll let you know how i get on, gentle hugs xx rosie

😁

Sorebones profile image
Sorebones in reply to rosie-2015

Please do 😀

Hi

Like you stress does make the pain worse.

I am suffering a flare up as I did a little light gardening and have a sore throat and cough. I too find nothing helps the pain, other than hot and cold treatments.

I get pain behind my knees too, I put Volterol gel on all parts of my body that hurts. I find that this helps a little. I also take hemp tablets (they're supposed to have chemicals in that marijuana have in that some countries allow for fibro), I think they help me relax. I get them from Amazon.

I hope that if you try any of these it might help you a little.

Try to pace yourself and take care.

Best wishes.

JanetM profile image
JanetM in reply to

Thank you. I will get some Volterol too. xx

Sorebones profile image
Sorebones in reply to

Get your GP to prescribe Ibugel Forte. It's stronger than any over the counter gels and works like a charm 🐸

TheAuthor profile image
TheAuthor

Hi JanetM

I sincerely hope that you are feeling as well as you possibly can be today? I also genuinely hope that your studies are going well for you?

I have just had a read of the *NHS Choices cache on knee joint pain, and there are a myriad of different reasons why we get knee pain that may not be Fibro related. The very first sentence says:

*Sudden pain in one of the knees is usually the result of overusing the knee or injuring it.

I have pasted the link below for you:

nhs.uk/conditions/knee-pain...

It could be just one of those things, and it may clear up on its own but it would not hurt to ask your GP if you could increase your Amitriptyline more? I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

JanetM profile image
JanetM in reply to TheAuthor

Thanks very much Ken. I am seeing him soon, so will discuss all these things with him. It is good to go armed with information.

TheAuthor profile image
TheAuthor in reply to JanetM

Good luck my friend.

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