at my wits end - any thoughts?

Hi I have been diagnosed with fibromyalgia and rheumatoid arthritis and what you’ve described is my life on a daily basis, I work full time two jobs as a nanny and healthcare assistant, I couldn’t imagine how painful it is sitting all day, my job is very active and I find it helps, very tiring and I can’t overdo it but it helps, also have overlapping conditions, IC, IBS, endermetriosis, RLS, eczema, dermatitis, asthma, allergies, Ménière’s disease, sinusitis, dental problems and constant bacterial infections, which makes it seem unbearable at times, I find flares are food/drink related, over doing it, not doing enough, not sleeping at the same time or poor sleep, animals and allergens and uncomfortable clothing/bedding ect, once you figure out yours it makes life easier, we are generally more sensitive than others, hope you find some relief soon  

To me, but I'm not a Doctor, just a sufferer, it sounds like absolute classic fibromyalgia! I'm not saying there is any one thing that will magically cure it (sorry) but there are various medications which can help, it's a matter of getting the diagnosis (from a Doctor who believes you!) and then trying the different medications until things settle down a bit. Personally I find the 10,000 steps too much for me so I aim for about 5 - 6,000. Good luck and I hope you find something to help soon.

I’m sorry you’re having such pain.  I’d get a second opinion.  I was diagnosed with fibromyalgia, myofascial syndrome complex.  I’ve had it since 2000.  I have arthritis all throughout my body.  IBS too.  And CFS.  I would definately get a second opinion!!!!!!    

Hi all ... many thanks for your responses am seeing the original rheumatologist tonight to get him to definitely rule out or rule in fibromyalgia and if Im not happy with what he says / does will definitely get a second opinion - thanks for all the advice, including things to take (which Ill try) and the bloody test (which I'll push for if I can't get any joy anywhere else). How on earth do I figure out what causes the flares, and even what is and isn't related when there's so much that goes wrong :-( ... I've just started having physio I am pretty sure that has started this current flare but who knows it could have been anything :-( will keep you posted once I see rheumatologist tonight 

Tracey89042 - I most certainly am no doctor but the Rheumatologist I went to after five years of unexplainable pain when nothing seemed to be wrong with me, used all the points your doctor ignored.  There are books all over the place about FMS and they all describe the symptoms you have described above. Yes, even getting my nails done is out now because the pain is so bad in my hands and arms re: position plus sitting long enough for the manicurist to finish the job is like getting my finger nails pulled out.  I truly recommend instead of going to that same doctor again and demanding he do something he should already know to do, call the Arthritis Foundation and tell them what is going on with you and ask they recommend you to a Rheumatologist that understands FMS.  Make a list of everything before you go from IBS to foot pain when you walk, to headaches and dry eyes to lack of sleep due to pain etc etc.  Has anyone done the trigger point test on you?  I'm sure you know there are no blood tests to prove your condition just as there are no blood tests to prove MS.  It just takes getting to the right doctor who gives a hoot about patients with pain.  I'm so worried about what the government is doing with controlling pain meds.  I understand the abuse but what about folks like us that live every minute of every day in pain levels going from 5 all the way to 10.

NOTE:  I worked for many years with FMS, Graves Disease and Heart Disease as well as spinal stenosis and felt working was my salvation as it kept my mind off my pain and gave me purpose.  During working hours I didn't take anything for pain as I knew I had to be at my best; I owned my own accounting business.   But then one day after many years of working like a trojan, I realized the pain was so bad I couldn't concentrate and by the time I got home at night I was worthless to my family.  That's when I had to accept other options.  And that's when I realized FMS pain isn't the same or the same intensity for any two people.  Taking anti depressants to overcome pain and depression from constant pain backfired and I tried to commit suicide.  Now my only choice is limited, I owned my own accounting firm and those days are over.  But I pray a lot that God help me cope and that I don't bore everyone around me complaining when they see me as a healthy woman who could have would have has been.

FMS is more accepted now that it was 10 years ago but even so, families and friends and even doctors just don't get it.  How could such a healthy person be overtaken suddenly on a shopping trip with fatigue. How could a healthy looking person have so many complaints and still be walking around without a walker.  How could such a healthy person not work with the woman down the street that says she too has FMS.  We are all alike and one thing to keep in mind - FMS wears you down not only physically but mentally because as the years go on and you have no one that you love that understands and folks start pulling back because they don't want to hear about your pain again,  When you finally realize that FMS belongs to you and there is no one who can give you relief, then the mentally drama will start IF YOU DON'T WORK HARD AT KEEPING THE BRAIN FOG AWAY AND LETTING DEPRESSION RULE PAIN. 

Hey all, so last night I saw my rheumatologist and went along with a long list of things that ail me, in the past he diagnosed mild psoriatic arthiritis but when he sat me there and asked me what ailed me I couldn't think of everything or only the things that were hurting me most there and then, so last night I had a list and he read and he said - it sounds like fibromyalgia, he did a couple of tender points nad some of them hurt - so he diagnosed fibromyagia and still sticking with the mild psortiatic arthiritis. I thought I would feel great that I had a name, but now I feel a fake, making a mountain out of a mole hill - I know never happy lol, gonna get some adjustments made at work though, I definitely need an up and down desk, sometimes my backside and back of thighs throb so bad I can't stand it - if I can stand up and work some of the time that will help - any advice you can offer me of what to do where to look, resources etc, etc, etc no new medication only what I was on, sulfasulazine for the osteo (which really helped the plantar fasciatis) I stopped taking amitriptalin becuase it made me so groggy in the day, so he's given me a replacement for that prothioden? naproxen I take but im not sure how much it does to be honest, and I have to lose weight I am over weight but have dieted for 30 years and all it got me was fat, I vowed this time last year never to diet again, it messes with my head really really badly, so I need to think about what I need to do about that and I need to try and do some light exercise, I tried walking but it really hurt my ankles and calves, so maybe walking but a little less and build up .. but any advice greatly appreciated - he suggested a sleep study, I think I sleep really well, but my husband says I stop breathing and I fidget constantly all night long, but that's because things go numb especially hips if I lay on them for more than few minutes ... thank you for listening XXXXXXXX

Wow Tracey! Wow! You are going through SO MUCH! I was diagnosed with Fibromyalgia but never really went through testing for it. I brought to my doctors attention after I did a lot of searching on the internet for my issues and found that the last years worth of appointments all show symptoms of this disease. The one thing that really made my doctor take notice was when I told her that I had broken out in hives and welts when I would apply ice to my new knee replacements. That happened several times, then I decided to not go through that pain and now I can't apply ice to anything on me. Ugh. All the surgeries that I've had and I'm also allergic to ice? I'm sure though Tracey that you must have the fibromyalgia too. There is not one test that determines that. But if you have all the symptoms...... then..... hello~!! Take care!!

Tracey, my heart goes out to you, you're putting up with so much for so long! It all sounds so classical Fibromylgia and getting a diagnosis definitely helps, even mentally!! Did rheum prescribe anything for you? Lyric, Cymbalta? I don't like either but I'm surprised he didn't try something specifically for Fibro rather than an alternative to amytriptaline!! A couple of things you describe make me think you've other things going on tho, you're hips going numb during the night, could you have a bursitis on your hips? It's pockets of fluid in the joint, they can cause numbness and pain, especially at night. An xray or mri would show it and a steroid injection can help, worth asking about. Another thing I feel you have because of the extensive pain in you hips, buttocks and thighs and also your shoulders, is Polymylgia or PMR, (Poly mylgia Rhumatica). It's classic symptoms are deep pain in these areas, pain and stiffness in bed, the turning in bed, or finding great difficulty in doing so is a real tell tale for me, pain and stiffness first thing in the morning which eases during the day. Lifting arms and stiff shoulders and fatigue. also. Again so surprised rhumy didn't suggest a blood test to see what your CRP and ESR levels were at. They can be high but also can be low but with the symptoms can paint the picture of Polymylgia. However, the only real way to find out is to start a course of cortisteroids, usually about a 15-20mg starting dose and then reducing. Generally in the case of Polymylgia the improvements are startling, usually within a couple of hours you can be pain free. I honestly would seek an appointment with another rheumatologist and go armed with all your information. I have Fibromylgia, Polymylgia, GCA , Osteoarthritis Psoritis, so you can have them together. So don't be fobbed off that you can't and I'd almost insist on trying a course of steroids to see if it makes a difference, you're gp could even prescribe you, tho if yours is like mine she won't make a decision, leaving it to the rheumatologist!! Hope you can get to the bottom if this and get some relief. Please let us know how you get on😊