My wife was diagnosed with FM 8 years ago and has done run the course of every treatment on offer. No drugs worked (or had too extreme side effects), but mindfulness, CBT & self-administered needle therapy help her cope with the pain.
As an inflammatory arthritis sufferer myself, I've always been confused by the fact that her joints get red and swollen as FM is not supposed to be a joint disorder (from what we've read)
We recently become very intrigued by a short course of prednisolone that she was given for post-viral chest inflammation as for the 5 days she was taking the steroids, she literally had no pain, impaired mobility, fatigue or 'brain-fog'. It was truly amazing. Within 1-2 days of the steroids string, the pain started coming back and within 3-4 days she was back to square one, brain-fog and all. Even more distressed as those 5 days had given her a taste of what life used to be like.
On the back of that we got a referral for a private rheumatology appointment and had the most awful experience. The doctor wouldn't listen, was dismissive, and was patronising in his re-diagnosis of FM, and couldn't/wouldn't answer our questions about swollen joints and the steroids. It has left my wife really, really distressed.
When I continued to probe him about why the steroids worked when they are not supposed to for FM, he just snidely stated that 'well steroids make everyone feel better' and implied that they had improved my wife's mood and so miraculously all the pain went away.
I think my wife and I struggled even more as we're scientists, and for us new data is something to be investigated rather than dismissed
So I guess my question is, has anyone else had experience of prednisolone working so totally with their FM? I'm sure I'm not mad in constantly reading that steroids don't work for FM am I? Really not sure what to do next and who to speak to
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kfsteve00
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I have had rheumatologists have that attitude with me and they have never answered my questions about my swollen red joints other than telling me " its JUST osteoarthritis" or "it JUST fibromyalgia". Never any answers about what help I can get. When I was first diagnosed I was given a steroid injection which helped enormously with the pain for a few weeks but they refused to give me this again. Its like they like to keep people ill for big pharma.
Welcome to the community, I can totally empathsise with your partners situation and hope to be able to share a little knowledge and experience with you with may help.
Steriods are not a medication commonly used for Fibromyalgia as you say and this is due to Fibro not being an inflammatory condition. The GP is correct that steriods do make everyone feel good for a while but with Fibromyalgia the effect is usually short lived.
However, this is not to say that your GP is not being dismissive as we have all been there and had to change Doctors or practices. Some Health Care Professionals seem to be this way as they are either 'old school and stuck in beliefs' or have very little knowledge of Fibro but most would never admit that. Although, I have had a GP say to me that they acknowledged that we are expert patients of our own condition due to having to be in a lot of circumstances and living with it 24/7.
If you feel your GP is being dismissive, I would consider seeing someone else at the practice and take up-to-date information on Fibromyalgia with you.
Managing Fibro is thought to best by using a combination of therapies like medications, alternative therapies, counselling, gentle exercise etc. The usual starting point with medication is tricyclic antidepressants – such as amitriptyline or anti-convulsants like Gabapentin/Pregabalin. I personally had a little relief initially with Amitriptyline but it wore off and also I was extremely drowsy. I tried Gabapentin which didn't help but Pregabalin did and I have been taking it ever since, however a side effect has been weight gain.
If this doesn't deliver enough pain control Drs may add in serotonin-noradrenaline reuptake inhibitors (SNRIs) – such as duloxetine and venlafaxine or selective serotonin reuptake inhibitors (SSRIs) – such as fluoxetine and paroxetine. Plus opioids like co-codamol or tramadol but drs tend to not use stronger opioids due to lack of efficacy possibly due to reports in research of fewer opioid receptors in the brain. Epsom salts in warm bath and muscle creams may also help (google muscle creams on here for a post with info)
You can find out more about treatments via these links
If the GP seems dismissive, please ask to be referred to a pain clinic. If you find they are unwilling, ask for it to be added to your notes you requested a referral but it was refused as per this post healthunlocked.com/fibromya...
Of course, you might also think about writing to the practice manager too if you think your partner's healthcare is no being addressed appropriately.
Thank You so much indeed Rett As a previous volunteer for the charity and Community Coordinator previous to our TheAuthor Ken I must admit I have had a little practice tee hee
That's right we go round in circles Shall we place bets next ha ha
My rheumy always says that the when I`m having a lupus flare it always kicks off a fibro flare and they put me on high dose steroids for my lupus and have been told that they won`t do anything for the fibro pain. So they ease my lupus flare but not the fibro one.
I always take a regular dose or steroids as I can`t get off them (but it`s quite low).
Prednisolone 'took away' the back pain I had been suffering for years. I was being treated for alopecea so the lack of pain was an extra bonus. I felt absolutely amazing. Full of energy and excitement for life. It could have been the lack of a pain but I believe the steroids did have an effect on my mood and general approach to life. I tapered off them so it wasn't too much of a bump when I stopped but I sometime dream I could have that time back.
Just one experience . I have no idea whether it is representative of the general effect of this drug.
To be quite honest I have found whenever anyone I know has had steroids including myself they suddenly become a different person, start eating properly, have less pain or symptoms regardless of their illness and seem to have lots of energy.
I always laugh at my friend who has to have courses of them not or RA as she becomes Superwoman. At the moment she is recovering from two operations one for cancer and was feeling so lack lustre she still had some steroids from another illness took some and she went from lying on the lounger to cleaning her windows inside and out. A relation of hers who was on a permanent dose for absolutely years and managed everyday life OK was recently taken off them and talk about boom to bust she could hardly function.
I just have a feeling that is what steroids do but from what I have been told in the long-term they can often be a fine balancing act between doing good and doing harm like many meds. Like hebden I had a one off steroid injection in my hip and the results were great for a good 6 months but as they are positive it is fibro related they won't do another one as in the end it starts to affect bone and surrounding tissues supposedly. I was told this by a physio friend who used to come in this site regularly and has no axe to grind.
I can understand now destroying it can be to have a gli one if how we used to be as it is absolutely cruel. I wouldn't be happy if I had paid to see a rheumatologist with that attitude and I was explanation forthcoming. Thanks k you for being so concerned about your life it sounds as though you are a great husband to her.
To be fair I think my wife is pretty amazing for what she puts up with. She's been on every drug (all did nothing), and does her mindfullness, exercise and all other complimentary treatments etc. which help her cope with the FM but don't do anything really to the actual symptoms.
So to suddenly out of the blue have her pain disappear has been such a kicker for her and its obviously knocked her back significantly in dealing with things.
I've always found the management of her condition frustrating, as I am 'lucky' enough to have a defined, named condition that the docs will treat. I can remember what it was like before I got on medication that controlled my arthritis, the pain and fatigue were life-ruining. So for her to have to put up with those symptoms without any intervention is quite extraordinary to me (I don't think I could manage having such overwhelming FM)
We went to the private Rheumatologist to discover why the steroids suddenly worked. To us, that is new data that is worth exploring (e.g. does she have an underlying condition that is causing the FM), or at least something to have a conversation about. But the doctor could not have been less interested in having any sort of conversation. He just thought we were asking for steroids, which obviously we weren't as long term steroids are a no-go, and was just so horribly dismissive and almost cruel in how he dealt with her. It kind of turned into a slightly heated argument about how doctors and scientists view data!
Wife and I have actually discussed her trying my medication to see if anything happens, just as it would add more data to a future conversation (again, as that treatment is for something that is not supposed to be involved in FM). But we know we absolutely shouldn't. As scientists it's very tempting though!
I'm extremely prone to chest infections and as an asthma sufferer, the only time I feel like 'my old self' is when I've been prescribed Prednisolone.
Doctors appear unwilling to prescribe this unless they absolutely have to and I believe, will do everything they can to avoid doing so.
Having investigated it further, it appears you have to carry a 'blue card' if you're prescribed Prednisolone for more than a couple of weeks as there are several concerns about the effect it has on the individual and how it interacts with other meds - especially for diabetics like me.
Having said that, I became so desperate at one point that I actually tried to source this drug on the web and although successfull, became fearful once I'd completed my investigations. Its definitely better to be prescribed the drug and monitored regularly than to get a 'quick fix' no matter how tempting this might be.
As you're probably well aware, taking it over a long period of time could throw up many symptoms and issues that are not present when taken for a short burst of time.
Please, please do post if you discover anything that could help or reassure me enough to 'dip into my illegal stash' I'm desperate to feel better.
Wishing you and your wife all the very best going forward - good to have some logical scientists on the forum - will definitely make discussions even more interesting.
Good to know we're not the only ones who have thought about the online dodgy pharmacy route! We were thinking about just having another couple of low dose, short courses, just to see if it was a fluke or not
Really aware of the long term effects of these as my stepmum had been on them for lupus since she was 19 and how she is still alive baffles us. The steroids have absolutely destroyed her body.
It is interesting that doctors will always regard physical health as being more important than mental health and happiness. So they are unwilling to give something with a defined physical side effect, even though the impact on people's lives could be enormous.
And yet I have an inflammatory arthritis and I can have whatever treatment I want. Steroid shots whenever I ask etc. All have side effects, but the desire to not be in pain trumps longer term health concerns for many. My rheumy nurse is always moaning about patients not stopping their immunosupressors when they get ill, and then ending up seriously ill or even in hospital. I myself have been this situation a few times..... even though you know you should come off your immunosupressors, you just don't want to be in pain again. I consider myself really lucky to be in less pain, even though I know I have likely shortened my life which the drugs i've been on. Its a shame for my wife that she can't be in the same boat
I don't know if that's the right term or not, but it's not proper 'acupuncture'.
They are tiny needles on sticky pads that you stick on yourself and wear longer term (hours/days).
My wife was offered acupuncture to help with the pain and it did a little. The nurse doing it said that for chronic pain/FM patients it wasn't about true acupuncture theories of chi lines and such, she simply stuck a needle in where it already hurt. She suggested these needles to my wife and she just sticks them in her tender points (I have to stick them in her back where she says she wants them). Apparently it helps, probably more as a distraction to be fair
You can tell when my wife is having a real bad time with the FM, as she has these tiny stickers/needles all over her hands/arms/shoulders etc
They are made by a Japanese company, but I think she gets them from Amazon.
I have what they term ''brittle asthma'' and COPD. As a result of this I have 10mg of Prednisolone every day as a maintenance dose. As I am so use to having steroids it no longer subdues my Fibro pain nor gives me extra energy unfortunately. When I take severely ill, (as I have done recently) my steroid dose is upped to 40 mg daily and this does help a little with pain and fatigue for myself.
Sadly, as a result of so many steroids throughout my life I have now got Osteoporosis. I have regular DEXA scans to monitor the bone density, and I take 70mg Alendronic Acid once a week and an Acrette D3 twice daily. I have personally found prolonged exposure to steroids can add to my pain and I have gained a fair amount of weight.
Overall, I would have to say that the steroids have saved my life when I could not breathe but the long term damage for me has been severe unfortunately.
I would like to genuinely wish you and your wife all the best of luck, and please look after yourselves.
Re ; predisolone..... it is most often used chest problems etc..... see kens reply above
But i also want to point out the affect it can have on moods to....
My young disabled grandson often has this steroid for chest infections etc....and almost instantly it turns him in to the most angery... aggressive person.....when he is normally chatty... loving and kind.
When i have had this med myself for chest infections it has made me feel so argumentative that i could pick a fight with anyone for no reason at all....
I am interested in whether others have experienced these side effects to?..... and to what degree?
Hello from the States! Just found this group online and read your post. YES! when I am on steroids my "fibro" is gone, totally in days. When I am in one of my worst flares, the kind where you just cant take the pain a second longer, I beg my doctor for a round of steroids. He reluctantly will write the script. He knows it helps, even though fibro sufferer's do not have real inflammation. I know I have inflammation. The problem is I think that Doctors cannot prescribe steroids with only a diagnosis of fibro legally maybe? Also insurance companies control how doctors care for their patients. My sed rate is always very high and after steroids it's normal and I feel normal. Unfortunately, when you land the diagnosis of fibro it's like the end of the road. My doctor told me as well "steroids make everyone feel better "but my labs back it up. Sounds like it's the same in the UK. I know this post is 3 months old and I hope in that time your wife has had some relief. For me, I'm going to a specialist 6 hours away this week, still searching for better medical care. Living in constant unrelenting pain is not something I am settling for. Wish me luck!
have been through very much the same experience. doctors tel me the fact that steroids make me feel much better - sometimes totally well - means nothing and dismiss it as "they do that for everyone, if you take a man off the street who is not ill and he takes them he will feel better, it means nothing". Well it means a great deal to the person who is struggling. I think a lot of fibro is misdiagnosed and is churg strauss anyway, the symptoms are almost the same, the cause is different and there are some extra symptoms with cs, but because it is rare they dismiss it instantly and move on to fibro. They then do not actually help you with fibro, it is just a word they attach to it, like telling someone with terrible headaches that it is migraine. wow. they are none the wiser and they are still struggling with it! I was told I could go to a physiotherapy group to learn about how to exercise with it. this place is 20 miles away when i have no car and am terrible with travel and very anxious. i have been doing my own exercises at home, i am the best judge of whether i should start or stop and how long for,not them, they will take a group and do the same for each person in the group! so if someone is very very slow you slow down to their pace instead of what is best for you. if you need help with all that and you are ill surely it is better to go onto you tube rather than travel a long way and spend a day to go there and then get that? I told my rheumatologist about all of my symptoms which include brain fog, shooting pains in feet and hands, depression, anxiety and much more. And he says well that is fibro or chronic pain. How does chronic pain cover depression, anxiety and brain fog? It makes no sense.I am now getting to the point of believing the best course for me is to self medicate with steroids. As the doctors refuse to give them and they are actually very cheap and easily obtainable online. They will say you should not take them because they can cause loss of bone density etc. Not if you take vitamin d and calcium and vitamin k they dont. And the steroid inhalers they push onto me can do the same thing!
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UCTD or Fibromyalgia?
Is beetroot known to control FM?
Life of a hermit priest!!!!
Positivity
