Hello everyone, I really hope that you are all as well as you can be. Autumn has arrived wet and windy here in Wales.
Some of you know that for the past five years I have suffered with an intense burning pain internally, spreading through my pelvis that has strange effects on my body. I feel an internal agitation, am unable to sleep, my heart rate increases, I sweat and shiver , twitch and jerk for days until it eases. None of my Doctors took me seriously and it has become more frequent, now every week so I am sleep deprived.
My new GP referred me to Gynaecology but due to a two year waiting list I had a private appointment with a Gynaecologist who told me I had an entrapped pudendal nerve and referred me to a Consultant Anaesthetist specialising in nerve blockers. I cried when she described my pain and acknowledged how bad I felt. The relief was huge. She told me she could not do the nerve blockers yet as I was in an Autonomic Crisis and sghe prescribed two drugs to help soothe my system. One was Duloxitine used for diabetic neuropathy, the other a trial drug Tarpentadol, an opioid. I had to reduce and then stop my morphine sulphate which I have been on for ten years which was not pleasant. I was advised I would feel rough for four days but then be fine.
Well far from being fine my body was wracked with pain, agitated, bile, diarrheoa , jerking, skin crawling. My resting heart rate was 146 bpm, my BP could not be measured on our home cuff. My head was thumping, I dry retched, I could not stand up straight with gut pain, sweat poured off me yet I shivered until my teeth chattered. Last Sunday I thought I was dying. I had had no sleep for six days. I emailed my Consultant. She told me it was strange that I had “ text book reactions” to Duloxitine and told me to stop it. I did but when I took the Tarpentadine I started to feel really ill within forty minutes. I messaged her again and her response, far from being helpful was to suggest I was a hypochondriac?? I sat up all night ( most of it on the loo) I felt so so ill. I rang the GP first thing on Monday. After two and a half hours seeing the GP, being monitored by the nurse then seeing the Pharmacist the consensus was that I had Seratonin Syndrome. I was told I shoukd have phoned 999 as it can be fatal. I was taken off Tarpentadol and put back on the morphine. If my tummy issues do not resolve I need to see the GP again as my gallbladder could have been affected.
Thankfully a week on I am sleeping, eating, resting without agitation. I continue to have brain spasms where my sight is momentarily kinked but it is less frequent thank God. I just wanted you all to be aware of something I had never heard of and get help sooner than I did.
My pelvic pain remains so at some point next month I am seeing the Consultant again hopefully to have the nerve blockers. Wish me luck 🤞🏻
Written by
CecilyParsley
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Oh Cecily, what a nightmare time! I’m so glad you got it sorted. We put our trust in consultants hoping they know what they are doing. I think I’d have to ask that consultant for my money back!
When I’m given a new drug I always research just to see what I’m being given. My husband was given trimethoprim for an infection years ago, he hadn’t told me he was given the tablets and 24hours later I thought he was dying, he looked dreadful. I did call 999 , an ambulance arrived and whisked him off thinking he had meningitis. It ended up being a reaction to the tablets. Anyway it all ended well thankfully.
I hope it’s not too long before you receive the nerve blocker and it works to give you some relief. I’m sure the gorgeous Finlay is still helping make you smile. 😊
Thank you Chris. I have to say I have never felt so ill in my life. Just awful. I am glad your husband was ok. Finlay and Skye are making my house filthy, I am picking up poop, wiping their paws because they have run through poop, putting down puppy pads only to turn around and find Skye pooping behind me . The joys of puppyhood but honestly the boys love one another dearly and we love them. It was a year yesterday since we lost Dylan and I was tearful all day thinking of him and how brave he was, fighting until the end bless him. Finlay and Skye melt my heart though xxx
My goodness. That sounds such a nightmare and so scary. I am glad that your situation has improved somewhat and hope that you get some proper pain relief soon. Thank you for sharing your story and alerting us to this issue.
I’m so sorry I missed your post yesterday. I, too have had serotonin syndrome in the past. In my case, it was immediately obvious that it was caused by being prescribed two forms of SNRIs when I was very depressed, and at a time before I was diagnosed with bipolar disorder. The SNRIs were the only meds I took and they spotted the syndrome fairly quickly.
On reading your symptoms I would not have thought of the syndrome although I had very similar symptoms. The syndrome is fairly rare as far as I know. I’m sorry you had to go through that. x
I am so sorry that you did too. It is horrendous isn’t it? I coped for seven days before seeking help which was silly really but I am still having brain blips nine days off the medication. I hope that your depression has eased now. I get reactive depression so I understand a little of what you went through. Xxx
What a dreadful time you’ve been having. And to be called a hypochondriac by a consultant!! That would make you feel 100 times worse! The support and reassurance of a consultant goes a long way in helping us. I’m so sorry you’ve had to go through all this Cecily but I hope you are now on the road to things improving and getting some quality of life back.🙏🏻 I pray you continue to improve and hope your nurses Finlay and Skye (as well as Neil of course) are keeping your spirits up. Love and hugs 💕🤗xxx
Thank you so much Spotty. I feel very weak still and having nosebleeds and brain blips but I am sleeping and can rest without my legs going like propellers. I will get stronger I am sure but I will be very cautious about any further drugs prescribed. I hope you are as well as you can be lovely? The weather is awful at the moment. Whatever happened to crisp, sunny Autumnal days? Xxx
I’m sorry you are still suffering so much Cecily. I hope you recover slowly but surely and I think you are very wise to be very cautious about any new drugs you are offered. It is terrible how drugs can affect us isn’t it? I started MTX injections 3 weeks ago but had some concerning side-effects 2 days after the 2nd jab, including crippling fatigue, blood appearing when I blow my nose, abdominal pain and diarrhoea, so have been told to stop it altogether for 2 weeks then start again on a lower dose. I had blood tests today so of course if my blood or organs have been affected by the MTX I’ll be stopping it for good but I hope not and that I’ll manage on the lower dose as I prefer the jab to big pills.😝
Storm Agnes is making her presence known here just now. I HATE storms and this is only the start of it with wind speeds of up to 75 mph predicted for tonight with damage warnings.🥴 I wish we could have our crisp, sunny autumnal days back again, as you say. Take care and I hope you regain your strength before long.🙏🏻 xxx
Oh poor you. I really hope you recover and then have no lasting effects on you. Good luck too for the smaller dose. I wonder why they don’t just start at a smaller dose and gradually increase it? Yes it is most definitely in front of the tv or reading a good book weather xxx
I thought the same as you regarding starting a drug at a small dose and gradually increasing it. 🤷🏼♀️ Thanks for your kind wishes Cecily, and I hope all the best for you too. 🙏🏻 In the meantime enjoy a good book. Xx
You have been through so much. Thanks for sharing. I have been trying find out more information as never heard of the terms before.
Found a video Dysautonomia & Drugs with Italo Biaggioni, MD
This doctor seems to have a better approach - he acknowledges patients often get bad reactions, no suggesting patients are hypochondriacs - far from it.
A friend of mine has the same symptoms and nobody believes her! She was put under the care of the psych team who suggested she was attention seeking! She’s still battling with it a year later. The sweat is pouring off her and she has burning all over her body inside. She hasn’t been able to go out for nearly two years.sorry I haven’t been on the forum for quite some while. On 6/7 I fell out of my stair lift from the top of the stairs and landed at the bottom of the stairs still on my back like a plank. I landed on my head in the hallway. My husband found me there. I had no pulse and was unconscious. He phoned for an ambulance which took 2 hours to come - even though there was no pulse! I got admitted to hospital. I had concussion, a fractured right temporal bone, a bleed on my brain, had damaged my kidneys, ribs, and bowel! For 20 days I didn’t know anyone and didn’t eat or drink. Then because I’m 67 was put in geriatric wards! I was in for 6 weeks. My legs just would not work and I was told off by the nurses for not trying hard enough! Eventually I was discharged if I agreed to home physio to help me walk. I was discharged on 17/9 and I have not seen hair nor hide of a physio! We phoned up to ask when they would arrive snd they said they were very busy and didn’t foresee any help available for the foreseeable future! I am now going privately. They are useless! They have it in their heads I have a hip problem but my hips only hurt because I can’t walk properly! They just will not listen and havent even asked me to walk to see it. I feel so let down by the NHS.
oh my goodness. I am horrified to hear of your situation. I fell downstairs top to bottom when in my early thirties and put four discs in my back out of line, dislocated my shoulder and a severe concussion so I can only imagine the trauma you have in your body later on in life. How did you fall out of the stairlift? Did you pass out? Bless your heart what a dreadful time you have been having and to get no help is abysmal. I truly hope the private physio helps you. Like me you have had no choice but to do that because we are not a priority. Our NHS is stretched to breaking point, the only losers are the patients because good Doctors will leave. Why on Earth should they put up with the poor pay, the long hours and the lack of recourses?
Tell your friend not to give up. She is ill, they just have not had the expertise to diagnose it. Lots of love to you both. Keep us all updated on your progress lovely xxx
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