A journey & a half to get diagnosed. ..yeas and years of 'you're just have chronic anxiety and slip in and out of depression' or 'xrays show nothing wrong' ....list is endless. Saw a supposedly great consultant 'the dr other dr's want to see'. Made me feel like a damned fraud. Did expensive tests and said I dont have cfs! Whoop whoop...ergo nothing wrong witj me. Year's if pain, confusion, mega hyperssensitive to lights, smells, souds, odd allergues even handbag handles cause massive welts lol.
Long story short: I insisted I had fibro so gp finally agrees. Seen oain consultant who agrees...seen spinal surgeon who agrees...eureka! !!!
Nothing works for pain.... so IV Lidocaine infusion suggested by pain consultant....have any of my new fibro friends had these treatment? ??
Xx
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Merrrm
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I've not had the infusions but just wanted to welcome you aboard. It's lovely to have you 😊
Many of us here have spent decades awaiting a formal diagnosis. Mine only took 30 years!
I just thought I would mention that it does tend to be a bit quieter on the forum over the weekends. Not always, just sometimes.
I've been a member here since 2012 and have read many a post about infusions so I'm sure there will be some members along soon who will be able to tell you how they got on.
There's one thing I would mention that is important to remember. Fibro is custom made to each sufferer. In turn, what may be absolutely wonderful and work amazingly well for me may actually make you feel worse.
If your Pain Consultant has suggested infusions that's what he feels you need. Where medications are concerned it is best to take the advice of your care givers (doctors, consultants, etc).
I look forward to seeing you around and chatting again.
I not had infusion either but my sister has. She said first couple of days she hurt pretty bad after that it seemed to help. I would stress the need to talk it over with your doctor. As it has been said each of us are different and therefore react differently to meds! I can't have infusion because of my reaction to meds. My sisters step daughter had it and it didn't help her at all. I hope this helps you. Take care
Pain, confusion (fibro fog) and sensitivity to light/smells/etc are common symptoms of fibro, Redhots7. Not so sure about allergies though, but the others are certainly symptoms.
Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you are feeling as well as you possibly can be today? And I genuinely hope that you find the forum useful, informative and loads of fun!
I am so sorry to read of the horrendous time that you are having and I sincerely hope that the Lidocaine infusion works for you. It is not something that I have undergone personally. I want to genuinely and sincerely wish you all the best of luck.
I have had Lidnocaine infusions in the past. At that time they consisted of being admitted to hospital for a week, having a drip containing Lidnocaine & suspension fluid, each day for 6 days, each day ratio of Lidnocaine to other fluid would increase. Drips used to last up to 8 hours.
When I first started having them in 2002, I felt like bionic woman once they kicked in for about 4 months. We used to go in every 6 months, but after a few years I felt the treatment wasn't working for me & with side effects decided to stop, shortly after hospital stopped doing this type of infusion.
Have also had infusion that was single drip over a couple of hours for shoulder pain but sadly this never helped.
Hope infusions work for you if you & doctors decide to go that route, are you in the UK or another country ?
Thanks for your reply Karen. I'm in uk. Frustratingly I have now have go via yet another pain management clinic where that consultant will do all the same stuff. .....before he will refer me to a further pain management clinic. ..because it is 'out of area' grrrrrrrrrrr!!!! Its going to take forever beung shunted from one to the other while they argue about funding.
I'm not given to 'depths of despair' normally, 'infact I make huge efforts to stay upbeat. But this tavesty/debacle has really gotten me down pretty low.
Hi so sorry it has taken me so long to reply, I've been dealing with the effects of dr increasing my Morphine so been in the land of nod a lot of time lol.
I used to feel a lot of pain during the week long infusion, if was like restless legs X 100 but it would ease off after a day or so of being home.
I've always suffered from high blood pressure & been on tablets & then had it under control but began to get really high readings when I was having infusion as they would take blood pressure every hour & have you rigged up to heart monitor, so was told by cardiologist not to ever come off the tablets again & the combination of the 2 have always given me a normal reading during my 6 monthly check up.
I also started having very bad chest pains whilst on the treatment one time, immediately it was stopped but eventually cardiologist came up, gave me this & that did s scan & tests & said I had suffered from a bad angina attack which required treatment for a few years but has now ceased also.
Don't want to worry you with my reply, there is a history of heart problems in my family, which is something I'm sure they would discuss with you once you get back to that situation with the out of area doctors.
Everyone is obviously different and the infusions I believe are now only over 2 -3 hours & just the 1 treatment so obviously not in the same kind of quantities of 6 days 8 hours every 6 months.
Those canula's in the hand or arm could be a real pain too but again for a few hours shouldn't be a problem.
Like any new treatment obviously get as much info out of the doctors as you can so you can make an informed decision based on your own conditions etc
Thanks Karen.... sounds like you had to deal with scary experience.
I'm pretty much stuck in tge 'system' at the min. Local pain management clinic not interested in what not so local clinic said... got to go through the whole song and dance yet again.
But local clinic doesn't actually do the infusion but have still got to see them as funding comes from them to pay for out of area clinic who does infusion.
What a waste of time and money. NHS: cut the burocracy and save mega money!
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