Not diagnosed but think I've had Fibromyalgia for a while

[Kathy6]

I used a self diagnostic tool and I put my symptoms in, at first it was coming up with things I knew I didn't have, but when I put in tender to touch and aching all over it brought up Fibromyalgia and when I looked at the symptoms I had at least 90% of them. I was diagnosed with Crohn's disease about 18 months ago and I put all the symptoms down to that, but with all the medication, I am still having most of the symptoms, had bloods and stool tests, no inflammation, couldn't understand why I was feeling so bad. I am going to see my doctor about this, has anyone got any advice?

[Pjik]

I really hope u do not have it it is miserable good luck at doctors

[Lucky88]

Kathy, I had trouble having my little bundle of trouble diagnosed as it got mixed up with heart and bowel issues. After some Googling I reckoned I had Fibromyalgia and made a strong case to one of the doctors that was trying to unravel my ailments. After many tests and 3 months (of pain) later, I was diagnosed as having Polymyalgia Rheumatica, being similar in many ways to Fibromyalgia. The key to to keep on at the doctor(s) until they really listen and make a diagnosis rather than just throwing pain killers at you (before being diagnosed, I ended up in A&E at 3am one day, close to death with side effects).

I was lucky to have only PMR and after a year on steroid treatment, I am back to 85% of a human and hoping that it doesn't come back. For pain I use iboprufen gel (the tablets give me problems), I drink loads of beetroot and cloudy apply juices and cut down radically on bread / carbs.

Good luck. On this web you will find support.

[Seeker7 in reply to Lucky88]

Thanks. I'm new to this support group and not diagnosed with fibro but just trying to get some more clues for aching legs when weather/pressure changes. I'm going to look up Polimyalgia rheumatica.

[YASMINTINA FMA UK Volunteer]

Hi there yes differently pursue this with doctor would be good to get some answers eventually, I was diagnosed by doc , bloods were clear, never mentioned anything about inflammation at the time, went on my contuinous symtoms , pressure points test , hope visit goes okay and hope it is not something to add to your crohns, but if you are ticking 90% of signs needs exploring xx

[Kathy6 in reply to YASMINTINA]

I have spoken to the doctor and she says it is very likely and she referred me to rhumetoligist and has put me on Amitriptyline 10mg at night, hopefully to help with the aching that wakes me up through the night.

[Heloise in reply to Kathy6]

These can be autoimmune diseases and usually there are antibodies of some kind. Ask if they will test. Symptoms can be very similar so thyroid antibodies should be ruled out.

[Kathy6 in reply to Heloise]

Hi Heloise, I do have an under-active Thyroid and I'm on medication for that. But my symptoms started way before, probably 15 years ago and has got gradually worse. Could it be that the level are incorrect of meds I'm taking

[Heloise in reply to Kathy6]

Kathy, yes, it's typical that autoimmune conditions begin years before any diagnosis and even then they are so puzzling as to know how to treat. It always comes down to steroids in conventional medicine unless they do a TSH test and decide it's your thyroid.

Why don't you post on the TUK forum and check your latest tests. It's very possible you are not on the correct dose or possibly you are aggravating your condition with trigger foods or chemicals.

[Kathy6 in reply to Heloise]

I haven't had a test in a while. I am on that forum I will get them to check my thyroid again.

[Heloise in reply to Kathy6]

That's a good idea. All three tests should be in optimal ranges. It is so tied in with smooth muscle as well and now we find that fascia has many sensory nerves which can account for pain.

[Marz in reply to Kathy6]

healthunlocked.com/thyroidu...

Hi Kathy - the above link takes you to an earlier post of yours when we did speak. Also some advice from Gambit62 who is an Admin on the PAS Forum. Do come back and post your latest thyroid results on Thyroid UK in case anything has been missed that TUK could help with. Maybe a dose increase and of course with Crohns you could well be suffering with absorption issues.

I was diagnosed with Crohns at 27 - some 45 years ago Hashimotos some 13 years ago.

[Kathy6]

I am aching head to foot, I also tender spots on my arms lower back upper back shoulders and neck and around my joints, I have been getting tension headaches and now migraines, I am very stiff on a morning, I have changed my mattress 5 times in the last year, but the aching doesn't go away, my ankles Knees elbows hurt, I can't stand for any length of time, as my back hurts so much, these symptoms come and go and they are worse than others. I am a real walker, as I have dogs, but I'm struggling to walk any real distance now. I have brain fog, I slow down can't concentrate, struggle to drive at times, these symptoms come and go, but I have noticed when I'm flaring up this is conjunction with fatigue and anxiety. I struggle climbing the stairs. I don't want to have this, but it is quite scary when my symptoms are so close. I have had my inflammation checked and that is normal, in my bloods and stool sample. I will get my Thyroid checked, but before they have checked it when I have been like this, it has been fine. I have changed my diet, gone gluten and lactus free, I've stopped drinking alcohol. Getting to the end of my tether with this, cos I'm worried about my job, I'm able to hide it at the moment, cos I work from home most of the time, but I do have to visit customer, sometime quite a distance away.

[Kathy6]

Thank you, at the moment the pain isn't intense but it wears me down and tiers me, just generally feel unwell. really worried that the Symptoms are going to get worse.

[Kathy6]

I have been to Doc's she referred me to Specialist and given me Amertryptaline to help me sleep and hopefully control the pain. I took my first one last night and I do think I slept better.

[Kathy6]

Thank you everyone for your advice. I am feeling much better today, the amitriptyline, helped me have a very good nights sleep. I am feeling much more positive