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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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.
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 🙈
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
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.
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.
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
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.
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.
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.
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.
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.
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
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.🙏🏼💕💜
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Just too much pain :(
Is it possible to know if you have Fibromyalgia at 18? Pain relief suggestions for when non-prescription meds don't work anymore?
Is this fibro or something else?
Chronic Fatigue
This pain is ridiculous
