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I just want to cry - Will I ever find out whats wrong with me?
For the past five months i have been suffering from pelvic pain. I find the pain difficult to describe. It is mostly where the hip joint is but sometimes can be felt just under my ribs and sometimes i have back pain too (kidney area). My periods are regular have a 25/26 day cycle and i have some clotting. I dont have bad period pain but do get very tired the day before my period. The pain came on suddenly and was a dull achey pain to begin with, sometimes it would be painful at night and i found it difficult too sleep. It has got better over the last 2 months and i only feel the pain now when i sneeze, cough, bend over or stretch too much. When the pain comes it feels like all the muscles in my stomach are pulling and it feels bruised inside. I would describe the pain as mild until one of the things above happens then its moderate. The symptom im finding the hardest is fatigue. Im constantly tired and struggling at work because of this. I have been for an ultrasound which showed my ovaries,uterus,kidneys to be ok, had a ca125 blood test which was fine and had other blood tests (kidney,liver,anaemic) which came back ok. Now i have to have another ultrasound as they didnt scan my gallbladder and the waiting list is 9 weeks. I feel like im going to be living my life in pain forever. I just want to know whats wrong with me and feel like my old self again
I am sorry I have no suggestions for you but just wanted to let you know you are being listened to, and to say so sorry you are feeling so rough. I really hope they get to find a cause that you soon so that you can start working on getting yourself feeling better.
and I know what you mean about fatigue. It is something that I find is the overriding problem with my own chronic condition which is in it's better phase right now, and I am still suffering from the fatigue which is always there now. Being in pain constantly takes so much energy, physically, and emotionally.
Sounds a lot like I felt when I had a (long term) chronic kidney infection and stones. You can have multiple u/s and blood tests with this that show nothing, I was diagnosed partly by passing stones but also by IVP - intravenous pyelogram, a special x-ray with dye.
Might be worth asking to speak to the Radiologist - they often have good ideas about more appropriate tests for your symptoms - or he senior radiographer/dept manager?
What about your diet ? Long time ago I ve know somebody who expierenced a very bad pain and when different tests proved that there is not any medical condition .... After a while the peeson found out that the reason of that pain was her diet and when she had stop eating a particular food her problems stopped
Have you googled fibromyalgia? I'm not certain if your symptoms fit but they sound fairly similar to a friend of mines symptoms and she was recently diagnosed. I do agree with brokenk who suggested looking at your diet - especially anything artificial like asapartame.
shiningstar how do I cope? I go to bed early. I forfeit my own personal time once kids are in bed to give me enough energy to get through the day. (I don't sleep well so that doesn't help!) I take berroca soluble supplements in the morning with a pint of water (boots energy something or other version is exactly the same ingredients, quantity the lot and half the price, and boots do 3 for 2 on vitamins) - it is all the b vitamins and some other stuff - those vitamins help the body release energy more efficiently - I can't say 100% it works or if it's placebo but i certainly feel worse when I stop taking taking. I take ACDE supplement - mainly for the vit d as that also is meant to help fatigue. Again I can't say how much it works and that is a recent addition to my diet. I try to drink more water. I try to walk at least once a day - and I know that is almost impossible when in chronic pain but it's really really important to try and keep mobile, not running a marathon or walking around the park, but just a little bit of movement helps. Fresh air - as much as possible as it helps me sleep better. A wing and a prayer and not really having a choice as I don't want the children to see me in bed all the time. But, I do from time to time go up to bed for a lie down when I can get away with it, although I don't always sleep. Oh - and I have just this week started the Expert Patients Programme which is a self management course to support coping with chronic pain and it will cover managing pain and fatigue as part of it. So hopefully I will learn some more techniques.
All those things do not take the fatigue away but helps take the edge off it. There are some days when I feel like I have a good amount of energy, some days when I have to leave work and go home to sleep as my eyes shut on their own. And lots of in between. I am not sure that's ever going to go away (that's how it feels now).
oh yes, and diet forgot that! Bread - avoid anything with calcium proponate in it, as it is notorious for zapping energy levels (along with other horrible things like increasing behavioural problems in children, replicating allergies to wheat etc). LOTS of fruit and veg.
And yes, you got to do all of this while managing your chronic pain, family and possibly a job...
The pain is just in my pelvic area now and has gone from under my ribs. It doesnt seem as bad now as it has been just get a sharp stabbing pain every now and then. Im still getting very tired especially in the afternoon. Im trying my best to live my life like i did before i had the pain (and trying to ignore the pain) which probably isnt the best idea as its making me more tired.