Having just had posterior cervical foraminotomy, I was struggling with pain. Nothing new for someone with fibro. However, my GP has always just upped the amount and type of pain meds I'm on, with me currently on Pregabalin and 25mg MST (OxyContin) morning and night.
After being readmitted to hospital due to pain, my surgeon was shocked to hear that after having a fibro diagnosis for 20 years, he was giving me prednisolone for the first time. Is there any reason anyone can think of why my GP wouldn't have tried this rather than upping the pain meds as I'm shocked at the difference that this has made to my pain and energy levels. Going to have an apt to ask my GP but thought I'd ask on here to see what others experiences/knowledge is in case there's a glaringly obvious reason not to have tried this!?
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Gweeda
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If your gynae doc didnt know you have fibro and its not on your medical history at a hospital then he wouldn,t precribe steroids, your rheumo doc should advise your g.p if they think prednis (steroids) are more suitable than conventional pain releif or to have it alongside pain meds.I beleive its called communication and somebody let you down.
It was a spinal operation on my c4,5 & 6 level through neurosurgery. They knew about my fibro and arthritis prior to the op. My senior neuro consultant was the one who prescribed 5 days of steroids at 20mg/day. The difference in my pain was amazing within the first 24 hours of starting the course. The cracking, peeling skin I've had on my thumbs for years has now also almost completely gone - which is amazing in itself but the difference in my energy levels etc was phenomenal. Even though I've had major surgery, I was managing to only nap once in the day and my pain was well within to,enable levels. Neuro consultant said its common for fibro to flare, particularly after an op like this, and that he was "very surprised" my GP had never tried it for me.
Today is day 2 off the steroids and I've no energy, a migraine and hurt all over again. Trying to wait the day out as nhs24 just seem to send me to hospital and I was going to ask about a small course maybe on a lower dose to get me over this post op flare.
I would like to give you the following information and my experience with steroids at the beginning of my pain prior to diagnosis as they felt it was tendinitis.
I am sorry but I must disagree with Hidden as Steroids are not recommended for Fibromyalgia (see EULAR Recommended Medications link below) so although your consultant queried your GP not giving them to you I believe they acted using knowledge of Fibro. Steroids should be given in circumstances where pain is thought to originate from an inflammatory cause and there is other times they are used for people who struggle with breathing among others. Please Note Steroid therapy is given for people with Polymyalgia Rheumatica (PMR)
As you have mentioned taking Steroids may initially help with pain as they did for me but this is temporary and is not recommended long term due to various side effects, affect your bones, steroid induced Diabetes etc .
Pregabalin is one of the medications recommended for Fibromyalgia pain and I also have been told I'm addicted by a receptionist!!, as I experience withdrawal symptoms without them but there's a big difference between dependence and addiction. I take Pregabalin as prescribed do not abuse them and have done for over 10 years so it would be normal for anyone to experience withdrawal in this circumstances. The person who said this to you I believe is wrong as people can become dependent and need weening off medications in many circumstances and this doesn't make them an addict - I wouldn't worry about this personally.
MST is not usually recommended for Fibromyalgia as strong Opioids tend to lead to a path of needing to increase the dose to have the same pain relief due to tolerance and the risks usually outweigh the benefits. An exception would be Tramadol or Tramadol SR as they act differently and work by helping serotonin reuptake therefore as it is reported that Fibromyalgia affects Neurotransmitters lowering some and increasing others this is why it is considered to help pain relief.
I have been on both of these for over 10 years with medications to be used as needed for breakthrough pain and also used Capsacin cream that is also reported to naturally reduce Substance P excitable to pain which we are said to have 3 times the amount compared to healthy controlled (DR Clauw) Here's a link about this cream that needs prescribing;
It is however very hot and strong, so some sensitive to medications may not tolerate it. It should be applied with gloves and a patch test 24hrs before use might be advisable.
However, for now this may not be a help to you as you are post operation and yes the Fibromyalgia may be flaring due to it as it's a stressor the body. I am not a Doctor, nor do I know your medical history and wouldn't even start to comment on your individual case but just wanted to comment about steroids and provide the EULAR that may be helpful for your medical team to help relieve your post op Fibro pain.
I sincerely hope this helps but do be guided by tour healthcare professionals however just wanted to say about the steroids not given by GP and why s/he may have done this plus respond to the comment you said you were told you were addicted. Pregabalin has had a bad reputation lately as it is used for substance abuse by some on the streets and also those prescribed it too, however if you are taking for pain and as prescribed you are not to think you are an addict. Dependent yes but this is different
Thank you so much. I was given my follow up call from neurosurgery and explained what was going on to them. They called in the pain team who agreed that steroids were not the way forward.
So I had codeine phosphate 60mg x4 per day and 2mg diazepam added to my Pregabalin, MST, citalopram and hormone tabs. Spent the last few weeks wandering round the house in a daze. However, I was also told on examination that the cut in my muscle had scar tissue attaching to the incision site scar which was restricting my movement. An on call physio added the diazepam and gave me special stretches to do whilst I felt the effect of the diazepam. I've now almost weened myself off the codeine (only occasionally needing 30mg tab for breakthrough pain) and am regaining a sense of normality. I'm still having the fibro flare but coping better with it now.
Perhaps if my GP had bothered to come out when I called, they would have felt the lump at my neck and realised something wasn't right! Seriously considering changing surgery. Called them at 8am - post spinal surgery saying I couldn't cope with pain- and they called back at 5.15pm saying they'd come out the next day. Instead I got a call and told to double my pain relief, without examination or review.
Hi , I have had to take steroids over the years for my asthma. Maybe only 1 or 2 courses per year, but over about 25 years, This has left me with serious skin atrophy, I bruise easily and will continue bleeding into the skin for about 5 days before it stops. The skin on my arms & legs tears very easily, is hard to heal. The dermatologist says this is all down to the steroids. I am currently waiting to see a haematologist as I bleed from the roof of my mouth. I think this is a common side effect.
Thanks. I've never had any real problems with bruising or bleeding but can see how that would maybe limit the length or number of courses the GP would give. I'm just probably feeling rubbish going back to fibro energy levels post op. Which means sleeping almost 24/7. Not great with a ten y/o daughter to look after!
Suppose I'll just keep an open mind and discuss it with the dr tomorrow. Thanks for your input though, gives me some more info.🙏🏻
As Fibromyalgia is a long term illness often taking steroids apart from short periods can be problematical as they can cause unwanted side effects as Spider395 has said. My close friend has taken them regularly and her skin is like paper and the slightest tear causes it to bleed profusely she has ended up in hospital with this problem. She also bruises badly with the slightest knock.She developed osteoporosis and cataracts which the experts put down to the steroids. They also increase her appetite and she puts on weight. I think short term use to help you during bad flares or after an operation would be fine. She always has to taper hers off slowly and even then seems to get a rebound effect of feeling very off colour for a number of days afterwards. She too feels fantastic when she is on them and wished she could be on them all the time. I think you need to talk over the pros and cons with your GP. Hope you are feeling better soon.x.
I have been on 10 mg for 6 years.not affected weight really.I don't bruise any worse than before etc and I am on warfarin too.I wouldn't be able to lift sheet on bed or walk without them.sounds dramatic but I was hospitalised and put on steroid infusion for a week and was like a new woman and have been on the 10mg since
Prednisolone can work wonders for inflammation and pain but at a cost. Steriods will damage bone density leading to a much higher risk of osteoperosis with long term use. I had great results with using it but was horrified to learn than even after stopping the increased risk is still there.
Spoke with my GP today ( finally! I called at 8am about post spinal op pain and got a call back at 5pm!) but they were not for giving me any more preds. However, they are coming to the house tomorrow to reassess my fibromyalgia. Been feeling a bit sick tonight with hot sweats. Hoping this is just an effect of stopping the preds and not the start of infection!
Also hope to ask why they were never tried before instead of me ending up on 40mg of MST and 300mg Pregabalin at 40. Which led to one neurologist telling me I am a drug addict. Talk about kicking a girl when she's down eh?! Went in in chronic pain with lack of sensation in my (needle hole free) arm. (Not that the other arm has needle holes either). Came out feeling like the scum of the earth who didn't deserve help. So thankful that the first neurologist had already sent the referral to the neurosurgeons. All in all I feel the op has gone really well, just flaring fibro making post op pain worse,
But thanks for all your responses. Thinking maybe it's to do with the bone density thing in my case. Was diagnosed with OA in my late 20's and don't really want to accelerate that 😊🙏🏻❤️
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