So its been nearly 5 years since i had pain start on my right side below ribs, since then pain has increased and expanded ( now includes whole pelvis, low back, still right side, now goes up both sides of ribs, left leg numb when walking, pain down front of both thighs, shoulders and wrists, burning in groin, vulvodynia, pain after eating, horrific bloating..) in this time i have had xrays, ct scan, numerous ultrasounds, an mri on my low spine (after falling down the stairs 3 times) laparoscopy to check for endo (none seen and no biopsys taken, suggested adenomyosis, then discharged)
Been under pain clinic now for about 1.5 years seen a consultant once, then nothing for a year! Had to call them make sure i hadnt been discharged. Under gynae as i have had period issues since starting them, had polyp removed, then told nothing wrong but they started me on zolodex (godsend!) for 1 year which has helped with the periods and flare ups they cause, but stopping this in December.
I am struggling to explain how im feeling to either doctor as i feel they dont listen to me and just hear what they want to (as proven by a recent clinic letter from the pain nurse)
I work within the hospital i am a patient at so i find it even harder to talk to the doctors!
Made to feel like im nuts or putting it on or just plain ignored!
My physio suggested it might be fibromyalgia so I said this to the nurse who asked if i had been diagnosed with it, no love thats why i asked you!
Im on 150mg of pregabalin twice a day, it helps but not a lot.
Im doing everything they tell me to do, yoga, meditation, breathing, walking, tens machine but honestly there is only so much i can do!
Im glad there is nothing glaringly wrong, so they tell me but i just feel abandoned by the NHS that I take pride in working for.
Finally seeing the pain consultant again in Dec but no idea what to say so any ideas on how to approach the situation greatly appreciated x
Sorry about the long post but its getting to me a bit now x
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rubine7521
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No worries about your long post ,you are basically telling us how it’s been for you, my daughter has endometriosis and other stuff going on and it seems the waiting times on the NHS are lengthy, getting the right advice and treatment too move forward, you need to be diagnosed by a doctor if it’s fibro and getting too see the same doc at surgeries nowadays is hard but if your physio has now suggested this you want some answers, you’ve got a lot going on with your body and working too so must be beyond frustrating for you and very painful. We do have too vent our feelings sometimes , I hope you do get the right help eventually , you are doing walking , mediation , etc and doing your best too keep going so I’m sending a big Xxx too you
Like you I have the same pain in the areas you have . Right side I've had it 7 years and now can't barely walk. I'm literally housebound. I've had scans and all sorts of painkillers nothing helps.I begged for another scan and am waiting for painclinic appointment. I've no quality of life anymore and doctors don't care. If you find any cure can you please let me know. Good luck to you.
Yes, it could be gallstones. Ask your GP to refer you for a scan. I found out that I had them last year due to a scan for something else, and then started getting related pain this year. The gastroenterologist I saw this year said I would have had them for a long time.
So sorry to hear the emotional and frustrations about your body/illness. My suggestion are. You are right to listen to your body and how it affects your life.
Because there are so many symptoms throughout the body start writing down a list of symptoms/pain and where it occurs.
In the next few week write down a food Diary to help identify if any foods which create flare-ups .
Write down you actively each day and any self help exercises you follow with or without pain.
Pull together a list of changes you had to make to support yourself with pain.
Mindset.
Write down the way your attitude and mindset has changed and how depressed you feel at times .
The Anxiety of making others understand is hard. Your pain levels start reviewing them when are they high and low.
Look at the side effects of your pain killers as they could be creating more problems for you.
Check you sleep pattern (do you have pain when laying in bed )
Ask why is my body giving you these symptoms.
You can already see there's a lot to think about however very worth while for you and the doctor.
listed your points out it will be easy for the doctor to understand how each event affects your life.
The impact you are looking for is for your consutant to understand you have looked at supporting yourself and the quality of your life living with such symptoms.
I follow this format after waiting a very long time to speak to a doctor who cared about the whole situation it was pushing me into.
It has also been good to read back what I wrote each day and how things had changed.
Some of my changes I made .
1)Use a ten machine. It works for me.
2) change my diet and lose weight to help my joints
3) taking fibromyalgia vitamins buy them from amazon.
4) chair exercises. Stretching exercises everyday throughout the day. It supported my pain levels
5) research my Conditions and medication.
6) rub my muscles with warm oils every day .
7) use magnesium spray for muscle pain.
8)Listening to my body messages and slowly making changes on how I do things.
9)my mobility has been affected by Fibromyalgia and Osteoarthritis . I now support myself with walking sticks but I keep mobile.
10) look at your vitamins levels check your water intake . Increasing your water 💧 intake will help your body support itself.
11) look at the shoes you wear are they supporting your back and hips .
12) use a hear pad to support your muscles. Keeping them warm helps .
These are just some of the things you can do to support yourself .
Your information is key to you and others trying to understand you illness 🤒 and what they do next is key to a better future living with pain.
There are many books and podcasts about pain listing to these can help you understand the messages your brain 🧠 is sending.
Looking at nerve pain will also help you.
There a lot of work here to consider but do it because your worth it. Good luck 👍 big hugs and kick back for what you deserve Xxx 🤗 💛
Definitely get investigated for gallstones - might not explain all the pain but might be some. I get pain right side and sometimes centre, at different heights, and a lot of back pain, all from gallstones and triggered if I eat more than a fairly small meal, or eat again too quickly, or sometimes just for no reason. Also helps to avoid 'fatty' food though I don't eat fatty food anyway. It was only investigated when I did my own research and suggested it, and I am now on the waiting list for gallbladder surgery. Might not be your problem but worth checking out.
As for the rest, I would write everything down before seeing the consultant, maybe make a log of symptoms for a week, that you can show. Write a list of what tests you've had and when, that sort of thing, and a timeline of what symptoms started when. I always get muddled in consultations and have to guess how long I've had this or that symptom, so that's on my list to do before I see the next consultant (I'm on the waiting list for pain clinic but probably not till late next year). I always think they could check my medical record, but they seem to prefer to make you tell them everything instead.
Hi Rubine, it does sound like you may have Fibromyaliga unfortunately.
It's basically your body becoming oversensitive to pain and can cause all your symptoms including period problems. I'm very surprised your doctor has not made a diagnosis. I think that's your next step, see your GP and tell him/her that you want a diagnosis. They should really be thinking about it.
Typically, your doctor should have you seen by any specialist going until they can't the cause, then it's diagnosed.
Pregabalin is quite mild, you have lots of options available all the way up to morphine if you need it. Nobody wants to live a life in pain or take lots of drugs, but many people have no choice.
Good luck, let me know how you get on. Don't take no for an answer
Hi Rubine. Unfortunately, they do not know how to treat Fibro. It is hit and miss, try this, try thatI have weaned myself off Pregablin as it didn't seem to be working anymore. I have not been able to sleep properly since then though
I too have pain mostly in my lower half and more in my righthand side
They can never find anything wrong with me and my blood tests say that I am super human!!! I have also had cameras everywhere
It is just something that you have to learn to live with I am afraid and maybe try some different meds if those aren't working for you
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Still no help and feeling desperate now!!
Cried myself to sleep last night ..
GP said he was going to let me suffer and be in pain for 5 weeks until my lidocaine at the hospital!!
accident prone or fibro?
I think I was misdiagnosed.
