Fibromyalgia? Plus endometriosis and hypothyroidism

[Luci20]

I have had all other body aches for a few years now, initially it was on and off and seemed connected with my hypothyroidism but now it is continuous and my TSH level has more or less been in range or not far off so doctors think I have fibromyalgia. I have been referred to rheumatology and I am waiting for an appointment. Is there any chance this could still be down to my thyroid as I have heard of many people still having thyroid symptoms even with a normal TSH? Does anyone else have a numbness feeling which is worse in the hands and feet? I had this previously when my thyroid levels were really off and have continued to have this symptom.

Does anyone else have fibromyalgia and hypothyroidism or endometriosis? I have heard about the connection between endometriosis and fibromyalgia. I have also noticed my body aches are always worse when I have my period or when I have pelvic pain. An endometriosis specialist previously said my hypothyroidism has been caused as a result of my endometriosis and I think everything seems to be connected to this.

[ShelWhitt]

Hi Luci. I can only tell you my experience. Had heavy painful periods from the start at 14 but thought it was normal.. eventually, after two children and perseverence, plus also frrequent migraines I had an hysterectomy for supposedly a large cyst. It turned out it was extensive endometriosis and they also took my ovaries out. I thought that was going to be the end, but no. That was onky the start. Things have only gone downhill since then. I was also having physio for spondylosis which worked short term but then back to square one. During this time I was also diagnosed hypothyroid and have been on levothyroxine ever since. The pain in my neck, shoulder and back got worse together with the constant head pain, which I have never been able to shift and I eventually stopped work in 1994. Continued for another ten years eating cocodomol by the ton, but pain and health getting worse and eventually I went privately to see a rhuematologist He thought it might be polymyalgia and put me on steroids for 12 months. I was also seeing a chiroparactor at this time due to his recommendation. He then retired and I saw another doctor who said it wasn't polymyalgia but fibromyalgia and referred my back to my GP. All the time things have been getting worse. I obviousy had several tests during this time but they all came back negative so I carried on trying various medications. but unfortunatly nothing helped and I couldnt tolerate the side effects so since then I have pretty much been on my own. My GP left and since then I have been seeing another, but we can no longer get appointments with whom we choose, in fact we are lucky to get any at all, I am allowed to have diazepam for a couple of weeks ab out twice a year but that is that. I am in a shocking state at the moment. In constant pain with all as above. My legs are now getting weak so it is now affecting my walking. I have had abdominal trouble for years and still have constant abdominal pain since hysterectomy Now my stomach is also swollen, I look pregnant, I have been back several times over the last twelve months. She has examined my and taken blood tests, also for my tyhyroid , which she says are OK. She says she can't feel anything in my abdomen. I am living with constant pain and constant worry. Its a nightmare. Also, I'm 80 my hubby is almost 84. He has dementia, COPD and is barely mobile plus several other things, as have I. I also had a scalp cancer removed two years ago which I fear has come back. So another hurdle to tackle. So add chronic anxiety and stress to the list and you will get the picture. Sorry to go on at length, but it has been a very long, painful journey, so far!

[Hidden in reply to ShelWhitt]

Have they ever tasted your insulin? Of course , I I don't know your circumstances: I am just sharing my experience because I had similar problems. My stomach was blowing up with fat, back pains, arthritis in every joint. I was watching what I put in my mouth but kept expanding. I asked my doctor to check insulin but refused because my glucose was low, even though I was prediabetic. Now I saw the doctor in Germany. The minute she saw me, she said I have insulin resistance, that she could see symptoms all over my body. Of course she did the test and it was positive.

[ShelWhitt in reply to Hidden]

Thanks. I will question this nect time I get to see a doctor!

[Luci20 in reply to ShelWhitt]

Sounds like you have had it tough. Sorry to hear all that you are going through and have gone through. I also have stomach issues and have had permanent bloating which doctors don’t know what it is down to. It’s very confusing having so many issues at once and not knowing what is going on and having doctors not really helping. I feel like my all over body aches are getting worse too.

[Ebony23 in reply to Luci20]

Hey. Have you tried ‘mebeverine’ for the belly bloat? It really helps with mine.

[Luci20 in reply to Ebony23]

I was prescribed that over 5 years ago but haven’t had it recently. I will ask my doctors to prescribe me this again as I am having a lot of stomach issues which is probably down to IBS as they said I had this previously. Thanks for that!

[ShelWhitt in reply to Luci20]

Thanks for responding. Doctors aren't ,much help really!

[Yassytina FMA UK Volunteer]

Hello, my daughter has both endometriosis (which is bad enough and recently found another cyst)and sufferers with Fibro ,so I can empathise having these conditions as I see what she goes threw trying too juggle p/t work/young family/studying, I hope the rheumatologist appointment is not too long too wait as this will help give you some more answers, take care and let us know how you progress xx