Question?: Something I have just picked... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Question?

ShelWhitt
ShelWhitt

Something I have just picked up on and wondered if anyone has any information on, or experience of, botox injections for head, neck and shoulder pain. Had problems for over 30 years and diagnosed with fibromyalgia 11 years ago,. Nothing has helped, in fact I am getting progressively worse. Am now thinking of going back to the drawing board, if only I can convince my doctor; as it is difficult to shift the fibro. label once you have it. Prior to fibro. diagnosis, after 20 years of pain, and all manner of therapies, physio, chiro, hypno, massage, acupuncture, I paid to see a rheumatologist. I had some 'tests' telling me I have spondylosis, degeneration of spine and other disc problems.. Am having so much pain am thinking of any other options I could try!

18 Replies
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My dad had spondylitis in his neck and every 6 months had Botox injections he said it really helped, I have the same but am not at that stage of pain just yet.

Panda

🐼

ShelWhitt
ShelWhitt in reply to Panda1968

Hi Panda. Thanks very much for that. Hope you don't mind me asking. Did he go private and if so, what did it cost and how did he find a doctor to do it.l If NHS , what was time ? (I know things are all on hold at the moment). Sorry to hear you are suffering too. Trouble is these things never seem to come in ones; and are never easy!

Panda1968
Panda1968 in reply to ShelWhitt

Hi Shell he was under the hospitals Pain Management team and given the severity and the pain this was offered to him on the NHS, I am in Essex and things seem to be moving now although I went to the hospital yesterday and there was hardly a soul there and it’s a very big hospital, perhaps ask your GP or Pain Management Team if you have one, we both had and have Ankylosing Spondylitis too.

Panda 🐼

ShelWhitt
ShelWhitt in reply to Panda1968

Thank you Panda. I am having a really bad spell at the moment. (that in itself is a joke, it seems to be constant) . I am not holding much hope out, considering the time I have been under the docs, but I am going to have to have another try. Nice to chat to you. Hope you are doing OK with things as they are, and that you are managing to get into the Christmas spirit. I really am going to have to make an effort this weekend to focus, even though there will only be DH and me. Take care and stay safe. xx

Panda1968
Panda1968 in reply to ShelWhitt

I know how you feel honey, take care stay safe xx

Hi I'm sorry you are in so much pain, it's the club nobody wants to be in!! I have spondylitis and degeneration of the facet joint and as you know many other things as well!! I had steroid injections Wednesday which at the moment don't seem to be working. Might just have to give a bit longer!!!

Thinking of you

All my love Lynne xxxx ❤️🤗🌈🌹💜🌻 xxxx

ShelWhitt
ShelWhitt in reply to Oldham65

Hi Lynne. Nice to hear from you. Too right about the club. And snap about the many other things as well. Trouble is, I don't know about everyone else, but I am so worn out with constantly trying to find answers whilst fighting the pain , running a home and in my case caring for DH as the same time, it sometimes feels like living in a nightmare! Although to be fair DH does try his best and helps where he can. I have to keep reminding myself to be grateful for what I do have; what I have had in the past and that there are others worse off than I am, but sometimes it is hard! Love and hugs. xx

Oldham65
Oldham65 in reply to ShelWhitt

Hi I know what you mean. Sometimes I feel like my conditions are battling each other and also what is good for one isn't good for another!!

I do try and think that there are always people who are worse than me but you are right, it is sometimes hard. I'm just exhausted , pain and lack of sleep aren't a great combination!! I'm trying to stay positive as I think it's a good mindset to have.

Take care and stay safe.

All my love Lynne xxxx ❤️🤗🌈 🌹💜🌻 xxxx

ShelWhitt
ShelWhitt in reply to Oldham65

Hi again. You are absolutely right.. The lack of sleep makes all the other problems worse. . I can't remember when I last slept through the night. Anyway on a positive note - I think. We haven't committed yet. My eldest daughter has called to see us this afternoon and invited us to their's for Christmas day. Her mother in law is on her own and is already in their bubble, but now that officially three households can get together over Christmas, we are allowed as well. I didn't see this coming; was reconciled to being on our own ; and had convinced myself it was the safest thing to do. So now, to be honest I am doing a rethink. DH thinks we should go and I think we will. Life is a lottery anyway and who knows what the next twelve months will bring.Love and hugs. xx

Oldham65
Oldham65 in reply to ShelWhitt

I'm sending you a pm xxxx

Hazel_Angelstar
Hazel_AngelstarAdministrator

Not had it personally, but a friend's daughter gets Botox injections for her migraines and they help

Thank you Hazel. I think it is worth looking into. Nothing to lose after all! xx

Hi, I feel your pain as I have in my neck for a condition called dystonia and really helps with the pain. I have had fibro for about 10 years then diagnosed with dystonia which causes muscle spasms and pain. I see a nerologist for this who also treats miagrane with botox.

Hi I do understand and the others that have been in touch so well!! I suffer with a lot of conditions! one of the worst being a brain injury 5 years ago which has thrown my life in to a terrible non stop spiral worst being apart from the constant pain that I am now disabled the ironic thing is I used to be a senior care assistant looking after people that were similar to me or even worse it is so frustrating I am even finding it hard write this message anyway enough about me and my problems I have just started on the Botox injections one next one next month not much change at the moment will just have to give it some time, oh I find them really painful but I am having put into my head. Please take and keep safe and wish everyone a safe extremely happy Christmas

All the best from Norman XxxXxx

It's ironic, isn't it, that we have to pay so much over the years, to finally get a diagnosis that has cost nothing, but despite that very little in the way of relief. They've kept the botox idea under their hats very well, I would say.

I have Botox for migraines - but as far as I am aware - it’s only licensed on the NHS for chronic migraines xxx

Hi , I had terrible pain in my neck for years when my Fibro started I still have it now but it’s not as bad I remember times I couldn’t even turn my head i found that acupuncture was the thing that worked for me at that time . I now suffer with terrible jaw pain instead which has been the most challenging during my Fibro journey I had Botox for that but it didn’t help me I used to put a wheat bag around my neck and I used tiger balm I’m sorry I can’t be of anymore help but I do know how painful it is .I’m sure this stage will pass and you might find that the pain will ease a bit . I hope so .

Hi, Shel,

I have fibro and one day just couldn't turn my neck to the left... this ended up lasting 1 year! I was diagnosed with Cervical Dystonia (although I'm not sure that diagnosis is correct tbh). I was given Botox injections in my neck, guided by ultrasound. Unfortunately they did NOT work at all, in fact they made my neck muscles weaker. I'm sorry to be negative but for about 3 months they actually made my neck really weak and I thought that was worth noting.

What ended up 'fixing' my neck was a medication called Clonazepam and a very specific manual therapy called "The Watson Approach". Here is a link to there website, they have trained practitioners in a lot of countries now I believe watsonheadache.com/

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