Is this just chronic pain?: Afternoon... - Fibromyalgia Acti...

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Is this just chronic pain?

sammiieels profile image
25 Replies

Afternoon, I'm trying to work out if what I feel is just chronic pain or if is could be something else. I had major surgery a year ago and since then suffered painful pain around my stomach. The past few months it's been effecting me in different ways as well as the stomach pain, I'm always having migraines which doctors just keep classing as chronic migraines, im extremely tired and struggle to stay awake during the day and due to the pain struggle sleeping at night. I now have pains in my ribs and my whole right side especially in my hips. I find myself in bed alot and I'm so depressed and anxious all the time. Doctors don't seem bothered and I'm just wondering if anyone else had this or if its just 'me'

Sorry for the rambling.

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sammiieels
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25 Replies
sammiieels profile image
sammiieels

Also I suffer quite badly with dizziness 😩

Hi please don't apologise your not rambling this is a support site talk away, I am new here having similar doubts do I have more than just my on off conditions my main concern on looking stuff up was the tummy bloating and pain and due a damaged knee many years ago have pain on off with that and other injuries bla bla so sorry for my rambling this is rambling lol,😁 I recently struggle to get up when I'm on the floor I think is it old age but I'm 59 my mam wasn't like this that age,my ribs hurt too still from a fall I had, why don't you join anxiety and depresshion site it's not all doom and gloom you can make friend there we cheer each other up with posts, and support, sending a hug 🤗🌷

sammiieels profile image
sammiieels in reply to

Thank you I'm just fed up of being told they won't help and just palmed of with more pills that also don't help lol 😆

in reply to sammiieels

I hate pills how about gel lol I do use that when I'm bad I have health anxiety so hate anything like pills I'm on HRT and menapause is blamed for a lot not sure about you with that I know I ache less in summer 😁

sammiieels profile image
sammiieels in reply to

I seem to be in pain all the time 😩

Sarahvit profile image
Sarahvit in reply to

Hi NatureLady, I am 62 and have learned that as we get older that our bodies take longer to heal. I fell a few months ago and my knee still bares the healing skin and notice from time to time that it will hurt like I just fell and scraped my knee. Yes getting up from the floor is more challenging but other times I have no problems. This aging process is something else. I think that the fibro and other conditions that go along with it makes it harder too. Did your mam have fibromyalgia? She was of a healthier generation so that makes a difference.

in reply to Sarahvit

Hi thanks for reply no my mamsnot got that hers is just arthritis think same with me but my dad had rhumatoid arthritis in later years I'm ok today but haven't been on the floor today haha,

Ellenindigo profile image
Ellenindigo

This resonates - I was exhausted constantly and always in pain. I was sent to endocrinologist whose wife had a condition called Ehlers danos syndrome, he said to go to see a consultant for rheumotology - i paid £200 to go to a private place three days later. she confirmed the EDS and osteo arthritis but also told me I had Fibromyalgia - which was the “pain all over” but particularly my back.

She wrote to my GP and ended a cycle of 27 years of being treated joint by joint one at a time, eye problems, migraines, “IBS” (was gastropareses), plantar fasciitis, brain fog…

Was worth the £200 I didn’t think I had… the waiting list for the NHS rheumatologist was 1.5years and when I saw her ayers after the private consultant she said it was treated by the GP anyway… but that letter from the consultant means I have been medically retired and am finally able to focus on rest and recovering.

Sorry it’s a long reply, it’s what pain does to us.

Take care and let us know how you get on…

Ellen

sammiieels profile image
sammiieels in reply to Ellenindigo

How do you find someone to help privately? So glad you have answers tho. My doctor has just told me to wait for pain specialist. It's been this way for a year and a bit and only getting worst. The most I've got was the hospital saying they damaged my abdominal muscles and its nerves pain but 🙈

Ellenindigo profile image
Ellenindigo

he gave me the name of someone he knew in the Nuffield clinic in marlborough

she was an NHS consultant who did also work in the private hosp

fibro seems to kick in when chronic pain is unresolved (as with me). So a pain clinic would most likely be where you end up - for me understanding what I had helped me

fast track onto the right meds etc

Blearyeyed profile image
Blearyeyed

Have you had blood tests and a recent check up?

sammiieels profile image
sammiieels in reply to Blearyeyed

I had blood tests in June so apparently don't need anymore according to gp today. I have appointments all the time

Blearyeyed profile image
Blearyeyed in reply to sammiieels

Which blood tests did you have?Did it include Vitamin B12, Folates, Ferritin/ Iron, Vitamin D and Kidney function ( electrolytes)?

If you still have symptoms , NICE guidelines are that you can have these six monthly , except for Vitamin D which is annually. So you can remind the GP of this and request them this month.

If they have ruled out other health conditions it certainly sounds like your suffering from unmanaged Chronic Pain ( from Fibro or any other health problems you might have and Chronic Migraine.

So you still require your GP to work with you to get you the medications and physio or self care techniques that help you to get your quality of life back.

Are you on medications to help prevent the Migraines or manage your chronic pain?

Do you also suffer other gastric symptoms or does the pain get worse when you eat or drink. It isn't uncommon for some people to suffer from IBS or abdominal nerve pain after a hysterectomy. Sometimes this nerve pain can flare or take more than a year to go into remission.

sammiieels profile image
sammiieels in reply to Blearyeyed

I'm on tramdol for the pain, amertriplile for the nerves and propanal for the migraines as well as serteline, anti sickness and anti stomach cramp medicine.

I just want to be able to leave my house again 😩

Blearyeyed profile image
Blearyeyed in reply to sammiieels

My Migraines got worse on a Beta Blocker , propranolol , as did my chronic pain , so it might help if you try other options.I also didn't do well with Amitriptyline.

I have Tramadol for certain types of pain but it was never the best option for me personally for nerve pain.

My daughter gets Mebeverine for various abdominal pain problems and I found that helpful too before my hysterectomy.

I have various types of Migraine partially helped by getting my Dysautonomia diagnosed and treated, but I also have Sumitriptan during an attack and Candesartan as a preventative. My daughter also uses Candesartan.

Sometimes the first options they give you aren't right for you as an individual, especially if you have a combination of pain conditions and different triggers for the flare in pain.

I only occasionally have Tramadol for flares of pain which is both inflammatory and nerve based. I eventually found very low doses of Pregabalin, Duloxetine and Paracetamol helped along with diet changes , physio, pacing my activity and stress reduction, gentle daily exercise, a good sleep programme, good hydration , some vitamin supplementation, breathing exercises and trigger avoidance.

It took years of trial and error for me getting a combination of low dose medications and self care and trigger avoidance to manage the pain about 85% most of the time which I class a success , as it's never cured.

I think that it would be worth asking to trial some of the other pain medication options if you haven't already. You usually taper up a new medication and taper down slowly from the old one. You GP is not doing there job if they just leave you hanging in mid air and don't assess all the options.

I would also advise you to request for the GP to refer you to the Pain Clinic as an Urgent request to be assessed for their Chronic Pain Management Programme and to see a Chronic Pain Consultant to assess your Fibromyalgia medication needs. It can take some time to get an appointment so it's worth contacting them sooner rather than later.

Let us know how you get on , and stay hopeful , it can take time to get the help you need but you can get there in the end , Bee

Goldenhaze profile image
Goldenhaze in reply to sammiieels

Something that may be worth looking into is your pain relief. Have your migraines worsened since your pain relief was upped? Has your overall pain worsened too?

Migraine sufferers have a real hard time with painkillers and it may be worth your while looking into ‘rebound headaches’. It’s a vicious cycle for me, everything gets worse (chronic migraine, fibro pain) if I take painkillers every day.

sammiieels profile image
sammiieels in reply to Goldenhaze

Yes the pain killers definitely make it worse for my migraines but without the pain relief I cant move its catch 22 😔

Goldenhaze profile image
Goldenhaze in reply to sammiieels

It really is! We moved 350 miles a year ago, and to redecorate and pack/move, I was HEAVILY reliant on pain meds, including Tramadol. I know it made things so much worse for me in the long run, but I couldn’t have done anything without them. It’s a bit of a cruel trick.

saj01 profile image
saj01

Hi Sammie.... not surprised about the migraines. Constant worrying and not sleeping well doesn't help. You don't say what type of surgery you had so it's hard to know whether it's connected to your stomach pains. But certainly worrying and being anxious all the time can cause problems with your stomach and some medications can as well.

sammiieels profile image
sammiieels in reply to saj01

I had a hysterectomy 😞

Sarahvit profile image
Sarahvit

Hi Sammiieels, did your major surgery was that involving your abdomen? It maybe scare tissue from the surgery. I had major stomach pain back in the 90’s and off and on through the 2000’s but now I just have to stay away from onions and spicy 🌶️ foods. Occasionally it acts up but am usually eat 2-3 bites of ice cream usually is enough to settle it down. It felt like a hot coal burning in the pit of my stomach. It was especially bad from 98-00 when I found a gastroenterologist who went in with a fresh pair of eyes and found it was Barrett’s esophagus so prescribed Protonix which made a night and day difference. Sorry for rambling on. Pursue it with your doctors. That isn’t a part of fibromyalgia but something else going on. I’m going through a similar situation with back pain and bone spurs in my neck. Now just need to figure out who and how it is treated.

sammiieels profile image
sammiieels in reply to Sarahvit

Yes the surgery was key hole hysterectomy but they checked and said they couldn't see anything but its most likely damage to my abdominal wall and nerve pain x

Sarahvit profile image
Sarahvit in reply to sammiieels

My stepdaughter just had that surgery as well. She is having issues too. Yes we have to be our own health advocates. It gets very difficult at times (well a lot). Praying that you get relief soon.🙏🏼💕💜

sammiieels profile image
sammiieels

Doctors just don't seem to want to help 😕

gladtobeold profile image
gladtobeold

Kick ass, they may have left something inside!

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