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not diagnosed yet but help
4 Replies
cat1983 - March 13

Hi iv had every test going and it all comes back as normal iv even had scans again normal. My gp believes it is fibromyalgia due to my symptoms.

I am in constant pain, my whole body hurts but the worst places are: where my spine and ribs join,my right side ribs and just below the ribs I carnt even wear a bra and this area is swollen so much so that iv got stretch marks in that area even though im loosing weight I carnt be touched and going in the shower takes ages and is agony. I get constant migraines and when I do the base of my head swells and causes even more pain.
I'm constantly tired and then don't get proper sleep at night. I feel constantly warn out, I have to almost crawl up the stairs.
I constantly feel sick when I smell food and have no appitite iv not been eating properly its been 4 months now I just about manage to eat a small childsize meal if im lucky and because of this iv lost 33lb in weight in 4 months even sitting on the sofa for too long makes my cocsyx hurt.
To help with the pain my gp has put me on full doses of paracetamol,tramadol,dihydrocodiene and nefopam with iburofen topical gel for my swollen ribs and even after all that I'm still in pain so my hot water bottle is my best friend.
If you have any helpful words or advice please don't hesitate please reply.
Thankyou for reading my post and here's hoping for a better future for us all.


Fantod - March 13

cat1983- Welcome to the board! I am very sorry to learn that you are so ill. I've looked over your description very carefully. You may have Fibromyalgia (FMS) but I am convinced something else is actually going on too.

The reason that I say that is due to the swelling that you describe. There is no swelling directly associated with FMS. It is always related to an underlying condition such as rheumatoid arthitis or medication.

Have you been checked for Celiac disease and/or a vitamin D deficiency? Either of these can cause widespread pain. The most accurate way to test for gluten intolerance (Celiac) is by using a stool sample. The Vitamin D test is done via bloodwork.

Unless you need to lose a drastic amount of weight, why doesn't your gp have you taking an appetite stimulant? It is no wonder that you are so low on energy. You should be focused on eating as much high protein as you can when you are able to eat. Would a high protein shake of some kind appeal to you at all?

I poked around on the Internet about your headaches and the swelling on the back of your head. It could be that you are experiencing "cerviogenic" headaches.

I'd like to suggest that you go on a symptom checker website like wrong diagnosis or webmd and do some exploring yourself. We can not post links on this website. Use Google to find them. Bear in mind that they will show a lot of possibilities that may NOT apply to you. Your doctor seems to be stuck. It is usually better to be your own best advocate under these circumstances.

I have "Allydonia" too. I can completely understand how much a shower, wearing a bra or just being touched can really hurt. I've spent the last 2 months in my night clothes unless I have to leave the house for an appointment. I drag my heating pad around like a little kid with a special blanket - lol.

I hope that you can find some proper help and a clear diagnosis soon. You are not alone. Take care and God Bless.


cat1983 - March 13

Hi fantob
I carnt thank u enough for ur advice and kind words.
I have been checked for celiacs and vit d and I take calcium + vitd suppliments they even tested my glucose levels to see if it was diabetes and they showed after drinking a can of coke that my levels are 3.4 which is the result of a starving blood test .
Iv been under the haemotology dep at one of the countries leading hospitals.
Iv had 6 appointments and they have 20ml of blood each time they have done everything and they said they were pulling at strings at this point they have done a complete full spine xray and a ct scar but nothing showed up as changed or abnormal.
The results I am waiting for at the moment are actually for rheumatid arthritis.
As far as the weight is concerned yes I definitly needed to loose it I just wish it could be in a less painful way lol.
I'm going to phone the hospital to ask for an earlier appointment to the one I have as that is for the 26th of april and as things are getting worse and my mum is getting more worried by the day and it doesn't help that I keep breaking down in tears but hopefully we will no soon.
Thanks again for your help


kvc33 - March 14

I highly suggest that you see a naturopath and get tested for food allergies. You may not have celiac disease but that doesn't mean that you are not sensitive to gluten. It runs in my family as well as allergy to dairy and sugar. Your headaches and swelling suggest an allergic response to me. From what you said it sounds like you suffer from low blood sugar as well. Stay away from sugar and have a bit of protein, carb and fat at every meal to help balance your blood sugar. Eat small frequent meals. It sounds like that is all you could handle anyway. How much weight do you need to lose?


cat1983 - March 14

I have tried keeping a food diary to see if there was any corrispandance between flarup of symptoms and food but nothing showed.
As far as the weight is concerned I could ideally loose another 34 to 41lb I think.
I'm going to have a proper talk with my doctor and iv written down all of my symptoms and anything that has changed since this all started.
Thanks for your replies



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