Hi everyone. I’ve ended up here in my 4 month search to try and find out what is wrong with me. I would greatly appreciate your advice! Doctors have tried to palm it off as anxiety and make me feel like a hypochondriac but there’s something wrong and I can’t figure out what it is. They want me to try 10mg amytriptiline but I don’t know if that’s a good idea.
MY SYMPTOMS
🤢 Severe nausea that lasts around 2 weeks. No vomiting. I can barely eat as feel too sick and I’m very weak.
👤 Ache in the back of the neck. A sensation on my scalp like someone has pulled my hair really hard, but only at the base of the skull.
💩 Loose bowels
🛌 Fatigue
I can deal with all the other symptoms but the nausea is really something else, it’s unbearable. This has happened to me 4 times since May and I can’t cope with this happening often. I’ve had dark thoughts at the worst of it because I’ve never felt so ill. I tried to make myself sick for relief but I couldn’t. My ears are fine and I’m not dizzy with the nausea.
In general (between these episodes) I constantly feel weak and like I need to sit down soon after standing. I get lightheaded. I have brain fog and zero energy. I’ve been like that for years.
Tests so far:
* Endoscopy - clear
* MRI of head & neck - clear
* Full blood count - clear
* Stool test for cryptosporidium & ova - clear
* Blood pressure - fine
Things I’ve tried for the nausea (none work):
* Ginger
* Sea bands
* Reliefband (electrical stimulation)
* Ondansetron
* Cyclizine
* Prochlorperazine
* Gaviscon
* Radical change of diet (very bland/basic)
* Mindful breathing
* Yoga
* Meditation
I also wondered if it could be hormone related but it doesn’t happen at the same stage of my cycle 🤷🏻♀️ I’m 35 with regular periods and no sign of perimenopause.
I would really really appreciate any advice! Healthcare here is abysmal at the moment so I’m doing my own detective work.
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CaptainHowdy
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Can I ask - do you get widespread pain or is the pain just at back of neck. Some of your symptoms *could* be fibromyalgia but pain would not only be in the one localised area
If it is fibromyalgia (which only a doctor can confirm for you) then amitriptiline is one of the recommended meds which help some people
You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
I would also suggest a very gentle spinal manipulator ( might be called a chiropractor)…I have had 40 plus years of neck/vertebrae problems causing bad pain, but at other times vertigo, fits and sickness etc depending exactly which vertebrae affected. No conventional medicine helped ( tho had various scans ruling out everything). I still see my manipulator every 6-8 weeks to limit problems….might be worth considering.
I am in the Uk…my manipulator was originally trained as a McTimoney chiropractor but when the two types of chiropractionary merged (?20 years ago, I forget) she resigned ( and having over zealous treatment from the other type with use of X-rays, tens machines and too vigorous treatment, I can sympathise…) … so from experience I don’t recommend all chiropractors…I need something much gentler to adjust my neck a tiny fraction!
hi there, if your really worried about Fibro. Then ask for a referral to guys hospital in the Fibro clinic, I don’t know where you live but surely your own hospital should be able to diagnose Fibro if h have it , as Hazel has said , it is widespread and in certain areas if the body , also I have heard they can now do a blood test for Fibro
Hi there. I’m intrigued you say there is a blood test for fibro. Do you kind if I ask what it is as I’ve been tested for literally everything but rheumatologist is quite arrogant and says it’s just because my joints ache. Thanks 😊
Unfortunately Guys Hospital only take confirmed diagnosis of fibro before they will see you. GPs now can and frequently do diagnose fibro without referral to rheumatology. Unfortunately as Cat00 says there is no reliable blood test for fibro.
Hi there, based on what you have posted. And I am no expert by any means. I would say your symptoms sound more anxiety/tension related rather than fibromyalgia. If I was you I would give the medication the GP recomended a try.
But please bear in mind it could take up to 6weeks before seeing any change in how you feel or you may need an higher dose xx
Migraine is another possibly. Migraines can have lots of weird symptoms other than head pain, you can have pretty much all of those things, has no doctor suggested that?
I’m sorry you’ve got to the detective stage. I’ve been there for three years now. I couldn’t tolerate amitriptyline made me ultra paranoid but some can take it. Nortriptyline is similar but better for nerve sensations apparently. I couldn’t tolerate that either but my ex partner used to swear by it. You know your body best so keep questioning if you don’t agree is the best advice I can give.
Fibro normally affects all areas and from my own experience is diagnosed by a rheumatologist after all other tests have come back negative. The exhaustion is typical of having fibro though but every person is different.
Nausea could be a sign of anxiety which also pops up as one of the symptoms of fibromyalgia too. Ask for a referral to a rheumatologist. Try eating little light meals often and perhaps ask your gp if an medication for anxiety to help in the meantime. Also take some walks even if you feel awful…. even a short walk around the blocks will help.
So sorry to hear you’ve been suffering. Fibromyalgia is widespread pain with multiple points of pain across the body, but you only mention the back of the neck - which would exclude fibromyalgia. It sounds maybe like vestibular migraine, or some type of migraine. Also possibly Craniocervical Instability (CCI).
As others have said I’m not medically trained but it doesn’t sound like fibromyalgia however I do also get the same symptoms with my head and neck but due to Ice pick headaches and spinal neck issues which does have similar symptoms. I would consider trying the amytriptiline you can always stop it if you feel it’s not working.
I would recommend a chiropractor for the neck/ head pain to see if there is any misalignment in the cervical spine.
Has anyone suggested IBS ( irritable bowel syndrome) for the nausea and loose bowel issues? Some people find a probiotic supplement can help with these symptoms.
This all sounds like a nightmare for you.- I agree with LittleOne. The neck sounds like one of the problems. A 'proper' chiropractor should be able to spread some light and treat that. Mine has kept me going for years, as also has my acupuncturist who is trained in traditional acupuncture, and five elements (a must). An older person will have also been taught proper acupuncture needling techniques. Some Colleges are not teaching this as they should.
Get recommendations for good practices from others and/or ask at local health food shops where the shop assistants chat with their customers and get the lowdown. - Above all, be careful what remedies or even foods or drinks you mix with any of your prescribed drugs if a chemist or GP hasn't told you already, and be aware that Google now has much contradicting information. Try looking at studies instead. - You'll get there because you've obviously been working hard to sort your health already.
You have without a doubt tried so many tests etc it’s just awful that you are dealing with all of this and getting no answers! Sadly it is a lottery as to what support and my I say understanding from various sources. Not being listened to or made to feel it’s all ‘in your head’😡doesn’t help anyone and yes it does make me angry. As I’m sure many others feel too. I hope you get some results soon as with getting a diagnosis makes an enormous difference/impact that helps immensely with every day life so I wish you well and am only sorry that I can’t help personally but the support from people who are struggling with this situation is as I know from personal experience a help in itself 🤗xx
HI C H... Your symptoms don't all sound like fibro to me. You don't say what time of day your nausea is, but as it's intermittent that would suggest something else...possibly to do with your blood pressure?
If you had fibro every joint in your body would ache... you might find yourself stiffening up... literally...to the point it's painful to move..
This is a long shot.... you don't say if you are taking any oral contraceptive or if you are having injections? Might be worth looking at your hormones....as well as monitoring your b.p. just a thought.
I've had fibro for many years and it also took many years to diagnose.For me it's aches and pains, and burning particularly in neck and shoulders. Base of neck included. Back spasms if I over use my arms.
Extreme tiredness
Brain fog
Anxiety
Irritable bowel syndrome
Fizzing in legs and arms
No nausea
Amitryptiline is a common drug prescribed for fibro. But side effects can be constipation.
Over many years what works for me are:-
Giving up work - I sat at a PC all day and I was in constant pain. I was lucky I could, eventually, but only after many years of pain.
Doing a variety of activities over the day. Keeping moving. Staying in one position is not good for me.
Never doing one activity repetitively for too long - e.g ironing, drawing, anything which involves head forward and applying pressure with arms.
Keep head over spine to reduce neck strain.
Going to a pain clinic on NHS - very good if you do what they say.
I learnt to pace my activities, take breaks, be kind to myself and lots more that I still use today.
Realising my life could not continue as it was and coming to terms with my limitations - Not easy.
Moving, stretching, gentle exercise that you enjoy, setting exercise goals, building up extremely slowly. Never pushing past pain. Just exercising below the pain threshold and slowly increasing.
Taking paroxetine for anxiety and stress. Stress flares up my fibro, tightening muscles and causing pain.
Mindfulness (for the above)
Eating healthily to prevent IBS and inflammation. Reducing sugar, increasing plant based, unprocessed foods.
Having a regular sleep routine.
Having a hobby that makes me calm and gives me purpose and a sense of achievement. Allowing me to meet like minded people and socialise.
Being honest with friends and family when I'm not feeling great and need to take time out for myself.
Drinking lots of water.
I was diagnosed by a rheumatologist after searching for help for many years.
I tried everything going:-
Chiropractor, Osteopath, acupuncture, neck manipulation under anaesthetic, tender point injections, Alexander Technique, pilates, yoga. To no avail.
But the above mentioned worked for me and finally I have a relatively pain free life and feel fit and healthy and positive. The better I look after myself, the more I find I am able to do.
Hope you manage to get a diagnosis soon and find what helps for you.
Ps I also found out that I have Sjogrens Syndrome and Hashimotos. A lot of these autoimmune disease are found together with fibro. These can also contribute to tiredness and pain and it can be hard to know what's causing what sometimes. But it's good to have regular bloods to check what you can check and keep yourself informed.
hi Hazel, I have had Fibro for many years. I have never had nausea or loose bowels as a symptom. The only thing you listed that I have had is fatigue. Mostly I have experienced difficulty sleeping, pain in different areas of my body, fatigue, headaches, backache. These symptoms come and go and are not usually all at the same time. I hope you are able to get help finding out what is going on with you, Andrea
Hi I have R/A and fibromyalgia the R/A came first it started with what my Dr thought was just frozen neck/shoulders I got up one morning when I was 40 and couldn’t move my head. I was diagnosed with Fibromyalgia 10 years later and have swelling an pain over my hole body with cramps in my feet an legs day and worse at night. Im on 50mg amytriptiline a night your Dr is seeing if a small dose makes a difference as you don’t have usual symptoms
This reminded me of a condition my son grew up with - cyclical vomiting syndrome. It can start in adults and is a migraine variant. Might be worth exploring if you are still suffering and haven’t got a diagnosis. It took 7 years to get a diagnosis for my son, there is no test, just an exclusion of everything else. The nausea was overwhelming for him, some episodes he didn’t have much sickness, just relentless nausea for days on end. Good luck with it, I hope this helps you on your journey to finding answers 🙏
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