Hello and thank you for being out there,
After calling the helpline today they mentioned this forum so I thought I would reach out.
I was diagnosed with Fibromyalgia in 2009 after years of fatigue and muscle pain. A few years later I was diagnosed with Endometriosis. Many women with endo’ have fibro’ so I equated all my various ailments to that and got distracted with the three surgeries to remove the endo over nine years; infertility and pain management etc. Now that I am in perimenopause (I’m 51) the end has improved with various treatments but the fibro has gotten worse and worse and taken on different characteristics. I am now living with constant pain (whereas it used to ebb and flow). I have such severe pins and needs in my feet and ankles it feels like I’m walking on glass. I have twitching and numbness in my fingers, toes and right eye. I have tightness in my rib cage like a deep cramp. My fatigue is so severe that even the thought of walking can bring me to tears. Muscle pain, especially in my calves and arms burns and I grimace and cry out whenever I get up from the sofa. Pain can wake me up and I have increased brain fog and intermittent tinnitus. I also have itchy skin (my shoulders are scratched to bits from nighttime scratching) initially excused this as the effect of grief (My Dad died a few months ago after a highly stressful year) but I’m now convinced I need an MS investigation. So much of what I’ve read on this site resonates with my experiences.
I have tried my best to live a healthy life in the past (eating well; regular exercise etc) but at the moment I’m so depressed because of these symptoms it’s triggering me to comfort eat.
My endo’ nurse is concerned about my level of pain and has ordered me a bone scan and a session with the pain clinic in a couple of days. I hope I have the energy to tell them about the misery of this pain and fatigue without breaking down.
I’m dreading contacting my GP, who isn’t great. Last year I felt as if one side of my face had dropped and all they did was order blood tests which came back with mild anaemia.
I apologise if people think I’ve dumped my misery on here.
Best wishes,
KGN
It sounds like your endo nurse is on the ball, so why don’t you see if she can refer you to a neurologist?
Don’t worry if you do break down into tears. I’m sure they are used to it in the pain clinic, and it would probably be a proper expression of how you feel and how it is getting you down. I’ve not broken down into tears yet with a doctor - maybe I should do. Friends of mine who have done have found the doctors respond better and actually get round to doing something! Do discuss your concerns with them (that you would like an MS investigation as that is what is worrying you, that it might be more than fibromyalgia).
Good luck.
Hello Kitten
There is no need to worry about ‘dumping misery’ on the forum. That’s partly what we’re here for. To support and be an understanding group of people who understand. You are welcome to the forum.
The big problem with having been diagnosed with fibromyalgia is that doctors often can’t see much further than that. Add peri-menopause to the mix and referral to a neurologist becomes that much harder to come by.
I do think you need to ask your GP for a referral to neurology. If you were to list all the symptoms that have you worried, it’s quite easy to see that there could be a neurological problem behind them. I’m by now means suggesting that it is, or even might be, MS, because there are many other neurological diagnoses that could be responsible. Or even that there is nothing neurological, maybe it is fibromyalgia plus menopause?
Why no sit down, write yourself a timeline of symptoms that have you worried and put dates to them. If symptoms have come and stayed with you, or if they’ve improved. Include the face dropping from last year as well as the tightness in your rib cage, brain fog / cognitive problems and all the other symptoms that are different from what you’ve experienced with fibro.
Take the list (try to keep it shortish) to your GP and request a referral. Your endo nurse won’t be able to refer you, it has to be your GP. I know you’ve said your GP isn’t great, but maybe there’s someone in the practice who is more sympathetic?
Good luck
Sue
Thank you for your supportive and kind responses - it means a lot. The pain clinic doctor first told me it was probably stress, then when I gave her more details of my symptoms she said she would give me something for my nerves - amitryptiline. I asked why and she said there was probably something going on with my nerves which my doctor would have to investigate, first with a blood test. I said I didn’t want the drugs until I knew what was the matter with me and got this investigated. I didn’t feel heard or seen but she did write to my doctor requesting this be investigated. I’m talking to him later this week. So first I’m stressed then she wants to give me anti-depressants - I’d laugh if it wasn’t such a cliche. I fear I’m at the start of a very long journey.
Hello again
Amitriptyline is an antidepressant, but it’s also an excellent drug for treating nerve pain. In fact it’s used as a neurological pain drug way more than for depression.
I take it for pins and needles and burning type pains, mostly in my feet. It works.
When a doctor tells you it’s a drug for your nerves, s/he doesn’t mean you’re depressed, nervous or ‘bad with your nerves’ (as the old saying went). It means they’re concerned that there might be something wrong within your central nervous system. The drug would be to help with pain and additionally help to relax you and incidentally aid with sleep. This is the reason we take the drug in the evening.
You might have felt the doctor wasn’t taking you seriously, but actually she probably was and asking your doctor to investigate is part of that.
Often people are prescribed drugs to help with symptoms prior to be diagnosed. It doesn’t mean the doctors are pacifying you with knock out pills or antidepressants, they just don’t want you to be in pain.
Sue
I’ve been prescribed Amitriptyline for tingling in feet and burning and it has reduced it, although not stopped it completely.
I was very sceptical about the effect it would have at first, but after around 6 weeks it did start to have an effect on the burning and tingling, which was a relief as I was starting to think I was imagining it all.
Could probably do with having the dose upped as the burning and tingling has come back to previous levels if not more, but it’s going some way to help ( even a little ) whilst I wait for some kind of diagnosis to happen or even start the process.
Thanks for this, Sue.
I wish I’d seen you and not her; your explanation in a few words was clearer than her entire consult. She must have told me “it’s probably just stress” about half a dozen times. I came out of there feeling like I should sit on the naughty step.
Thanks again.
K.
I was given it for “stress”, but it actually helped me sleep better at night and did away with the leg twitches and aches for as long as I used it.
I learn something new here every day! To the best of my knowledge, 20+ years ago, Amitriptyline wasn’t used in the US for anything other than “stress or depression”, and I think that’s still its most common use.
Thank you for the nice words Kitten.
Just a follow on, this is the information on nerve pain from the MS Trust: Pain | MS Trust The first drug they suggest for neurological pain is amitriptyline.
In particular, they quote from the NICE prescribing guidance:
‘ The National Institute for Health and Care Excellence (NICE) has issued guidelines for the treatment of nerve (neuropathic) pain(link is external). As common painkillers are not effective against nerve pain, NICE recommends that people with MS should try amitriptyline (Triptafen), duloxetine (Cymbalta), gabapentin (Neurontin) or pregabalinLyrica) first. Treatment usually starts with a low dose and then builds up slowly until an effective dose is reached. However, as pain is different for each person, health professionals may recommend different options depending on what may be best for you as an individual.’
B Boy, there’s no reason you shouldn’t be able to increase your dosage. Generally people start on a low (maybe 10mg) dose and very slowly increase it to get the best results. You should take the drug reasonably early in the evening - by about 7 or 8pm so you don’t wake up with a muzzy head.
Sue
Thanks Sue - I’ll get myself back to the doctors and ask about increasing the dose.
I need to go back and find out what I’m supposed to do next after having a nerve conduction test that came back ok and showed no problems.
Feel like I’m back at stage one of trying to find out why I’m like this.
Thanks!