Hi I wanted to get some advice if possible. Sorry its a bit long. Its mostly venting, so could skip over most of it.
In 2015 I had no health problems, was married, about to finish a phd, and in a job I enjoyed. Fast forward to 2017, Ive developed two autoimmune conditions, and assorted other conditions, such as severe multi-tone tinnitus, blurred double vision, arthritis etc bleeding etc. And Im divorced, no longer working and had to give up on the phd. And feeling pretty sorry for myself and a bit in shock.
In addition to teh two autoimmune conditioons, the consultant is testing for scleroderma and anti-phospholipid syndrome, to explain the so far unexplained symptoms, like livedo reticularis (or novelty purple legs). Though I have so far tested negative for the relevant anti-bodies.
On top of that, at the last consultation, he said he thought I might have fibromyalgia, and that it could explain the aching muscles. But Im not so sure and wondered if anyone might be able to offer some expert insider advice.
1. I dont really have sleep problems, despite the 8 plus loud tinnitus noises screeching in my head and seeing flashing lights when I shut my eyes. Its a bit like trying to sleep on an airport runway on a busy day. But I still sleep somehow. I do wake up feeling unrefreshed.
2. I do have severe depression but I think that was in reaction to my life and health having collapsed.
3. I have lots opf muscle pains but they are not in response to pressure being applied. They are just there and move aroubnd.
I know you arent doctors (at least not all of you) and that you cant offer a diagnosis. I just wanted some ideas if posisble I guess. Thanks a lot.
Best wishes
Written by
charlieab
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Heaven knows you're entitled to vent with that lot going on! I think essentially the difference between Chronic Fatigue (aka ME, CF) and Fibromyalgia (FM) is that it often includes pain as you describe. The essentials for FM types of pain varies, day to day and in severity, moves around, impossible to predict. FM sufferers have many other, and often Auto Immune known conditions in common. Sounds like you have a good GP. Makes huge amount of difference I promise! Tulip aka Dawn xx
Thanks for your reply. I hope you are doing ok today. Tbh my GPs have not been great. I had to go private in the end, which I dont think folk should have to do. One GP said that the livedo was just a reaction to teh cold and the next one said it was just a reaction to the heat! Im guessing a third would have said it was just a reaction to the meium temperatures. It took the consultant to say that it was the result of some underlying condition, maybe APS.
It can take years to get an FM diagnosis, usually after everything else has been ruled out. Also many symptoms copy other conditions. Still in need of more research. xx
Just thought I would add a bit more info. from my own perspective. I have Alopecia (since age 12) Lung condition, Hypo Thyroid, variety of allergies, Tinnitus, Asthma (seperate to lung thing above) Diabetes, different types of pain + Migraines, Sciatica (playing havoc at the moment, Neuralgia, Brain Fog (VERY common with FM but varies person to person) sleep problems - too much or too little, Rheumatoid Arthritis, IBS. Umm. Probably missed something.
There are many who just about manage to hold down a job. Then again, some like me are basically housebound, and many who struggle in between. It's all about a day to day struggle. We all try to help, support and offer advice as we can but your relationship with your Dr. is vital! There is still not enough known about this condition and some Dr.s dont 'believe' in it and think it's 'all in the head'. Possibly because another thing we share in common is depression and/or anxiety. Cant imagine why lol Dawn
Sounds like you have had a lot to deal with. I dont think I have RA but have psoriatic arthritis which has some things in common I think. I click so much now when I move that I think being a cat burgler or Ninja are no longer realistic career opportunities! You are right about the depression and anxiety. And about helping each other. I hope to get back on my feet sometime and would like to write about autoimmune conditions and how Drs deal with/ dont deal with them. That is with I can see my feet through the brain fog!
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I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.
I am so truly sorry to read of your suffering and struggling and I sincerely hope that you can ascertain the answers that you are looking for my friend. It is possible to have Fibro and other medical conditions. However, the same symptoms that you describe also match other medical conditions such as thyroid issues, Lyme's disease and others.
I want to sincerely wish you all the best of luck and please take care of yourself my friend.
Welcome to the forum and I am sooo sorry to hear how much you are suffering. I just want to give my 20 cents. I read up yesterday on Dr. Google about iodine deficiency and lot of the symptoms that we have with fibromyalgia are the symptoms of too little iodine. Maybe have your iodine levels tested? I live in Africa and we do not have such testing here, but I am considering taking iodine in high dosage to see if anything will change. It takes a long time to build up to a higher level - I have had fibro for 35 years :(.
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