Hi Jean, I was diagnosed with Lupus in May 2013. Mine is the mild type, discoid lupus, but still have some of the symptoms as everyone else ie painful joints, hair loss. As well, I have had fibromyalgia for 25 years so I have had to learn to adapt to this as well. The main reason for being tired and achy is that your body never goes into that stage 4 sleep where your muscles repair. When I am extremly tired, I take Zoplicone (5 mg) which helps. It has a bit of an after taste but for me it's worth it to get some rest. It doesn't make me drowzy the next day either. I also take Glucosamine 3x a day (500 mg). This helps with joint swelling and morning stiffness. You have to take it for a month before you see any improvement though. The one thing is try not to over due it otherwise it will knock you sideways for 2 days to recoup. Also, stress is one of the biggest factors exaberating it. Whenever I had a flare up, it hit my chest first, felt like I was having a heart attack. The worst part of fibro is the chronic fatigue that you suffer with it. You have to let things go. I do my housework at 5:00 am in the morning when I have the most energy. B12 shots also help to improve this. You learn these little tricks as you go along. The wet winter months can be the most painful as whether has a huge impact on you. Let me know how things go with you on this. Good luck.
Hi Sue
Sorry for my delay in replying. I am extremely disappointed for you. This again is somebody who does not understand this condition and knows so little he will not acknowledge it!!! Do persevere by asking your GP to refer you to another Rheumatologist. When the rash on your face next appears take a picture! They cannot refute evidence. I get so cross that we get dismissed so easily. I recently went to see an Oral consultant as I get so many mouth ulcers - my rheumatologist referred me to him - I know this is part of my MCTD but I went anyway - cos I had no mouth ulcers at the time and he took the usual blood tests - which showed him nothing - he said there was nothing he could do and to come back when I had a picture!!!!! Think I was just another number of his case load!!!!
Don't give up and struggle on alone.... it is quite depressing to feel ill all the time and it is unfair that you need to!!
Take care and keep in touch! X X X
Hi Jean,
Thank you for your kind words. I recently saw my GP who has done more blood tests as I now get pain in my hands (painful finger joints etc). I am hoping that something is picked up as this really is not normal. My blood pressure is also quite high now so they are monitoring that with me too.
I hope you have better luck in the future with the Oral consultant too. Keep 
I went private for my first appointment, as I couldn't face waiting weeks, I realise not everyone is able to do this but it was worth every penny or should I say pound, I had an hour with the consultant who then did all my bloods etc on the nhs, diagnosed right away, that was 4 years ago, how my life has changed,but iv learned to live with it, I keep fairly well,but rest plays a huge part of my life, I'm now on azathioprine, once they find a med that suits you, you can start to enjoy life again,hopefully it won't be much longer for you.
Thank you Marion. I hope they find out what is wrong soon, I am just so tired most of the time and have to go to bed. If I do try and do something (eg housework, trip out) I suffer for days after. I don't see my GP again until late August as she is going on holiday, I will keep everyone posted if anything further develops.
Hey Sue, I've been going through this for years now with the same symptoms and results you have had. I'm so sorry you've had to go through this. I had a diagnosis of fibromialgia about a year ago but after a few days in the ER for very high blood pressure the doctor is sending me to a rheumatoligist. I don't expect to get an accurate diagnosis from him and may get the same response you got but what else am I gonna do? My symptoms are erratic and I never know how I'm going to feel so it's hard to have a life.
Good luck to you and the others suffering from this malady.
Hi, I am sorry to hear you are suffering with the same symptoms I have. How was your fibromialgia diagnosed? I am currently having my blood pressure monitored as it is quite high and may need to take medication for it which I am not really happy about. I hope you get a better response from the rheumatologist than I did, keep me posted.
I will post on the site when I have had my remedial nerve root block injections, still waiting for the appointment though! Good luck and I hope you get some relief soon.
Hi Hoop & sue
I also received a diagnosis of fibromyalgia from both my GP and Rheumatologist. Both advised me to take pain relief!!! Not sure either of them grasped how painful fibromygia can be and how much it restricts your life. Problem again is that high doses of pain relief just give you another stomach problem!!! Don't think we will ever get proper answers.....somtimes I think they want us to manage our own problems because they don't have the answers!!!
Hi Sue and Jean.
For years I had the symptome of an auto immune disease but because the symptoms would come and go no one would give me a positive diagnosis. Finally last year they changed the spots where they poke you to see if it hurts and decided I have all the symptoms. I think the blood in my urine and my blood pressure of 205/98 caught their attention.
Jeane, I think you're right; they don't like to admit that they don't know what's going on so to save face they tell us it's all in our heads.
Mmmmmmm.... I have mixed connective tissue disease and at the last count I have 3/4 immune disorders.....my GP thought of all the most ridiculous explanations for my symptoms. My concerns, as point out is that if they don't diagnose and fix problems they ususallly get worse or you get additional symptoms.....blood pressure of 205/98 is worrying!! My GP is quite nice to me now that he has the reports from the Rheumatologist!! Just something simple like I have problems sleeping (I don't do it very well!) so I asked for sleeping tablets.... you would have thought I had asked him to scale the Eiffel Tower......but now cos somebody has decided that I DO have something wrong with me...he lets me have them every now and then and I get to snooooooooooze for England...not a lot to ask for something that lots of people do naturally. I must be good at nagging!!!!!
Hi,
I'm still waiting for an appointment with a Rheumatologist, but I just wanted to say that my GP has been brilliant. I've had about 8/9 years of various aches, pains and weird and wonderful symptoms which all seemed to come on with a vengeance one after the other after my recent abdominal surgery. I went to my GP with a list and straight away she suggested Fibromyalgia, but accepted that some of the symptoms I have don't fit so she did some blood tests and lo and behold: Positive ANA, raised ESR and CRP, reduced Lymphocytes etc. And a referral! It was she who suggested I take Amitrptyline in a low dose to help with both the pain and difficulties I've had in sleeping. I only take 20mg (as well as some Paracetamol and Ibuprofen) but it does the trick. I get to sleep quicker, sleep deeper and although I do oftentimes feel tired I no longer feel like the dead walking!!
Keep your spirits up as there are some understanding doctors out there!
Oh my gosh Jean, it's so nice and scary to know how many of us are in such pain and yet I never see any commercials about mixed connective tissue disease. I was diagnosed with mixed connective tissue disease, lupus, fibromyalgia and ranoids about 11 years ago. I have seen around 30 Doctors who have all given me different things like medicine. I saw a Doctor once that I had to pay 4,000 up front because my insurance didn't pay for it. I was basically put on a table and stretched and then I would put my feet in this water and it turned orange because it was trying to get the toxins out. I even heard about this one man who had cancer and sat in front of these rocks (I'm sure they were called something magical) and just sat there for an hour and I know you'll find it shocking when you hear that it didn't do anything, nada, crap so I have tried so many things. One Doctor put 16 shots of glucose in each leg every week and shockingly enough that didn't work. I'm not sure he was really a Doctor (ha). I am now seeing a pain Doctor. For so many years I would wake up every morning feeling like I had the flu. I just wanted to die. No energy, it hurt to walk, it hurt to sit, it hurt all the time, especially my legs. Lord they hurt so bad, I was so depressed. When you're in pain you don't care if your liver drops out of your body, you just want the pain to stop. My pain Doctor has me on Lyrica, oxycodone, fentenal (sp) patches, Zoloft, Wellbutrin and to sleep I take temazapan. This was the last thing I wanted to do was to take all those drugs but I'm not in all that pain I was in. I'm not saying I feel so perky now but I'll take anything other than that horrible pain in my legs and elbows, wrists and shoulders. I used to be so active, worked out all the time, took care of my 3 babies and now I'm still tired and I have to absolutely force myself to get up and do anything but I'm trying. I feel like my kids think we'll if mom doesn't have to work than why should I. It's hard, in the last year I've lost my beautiful 19 year old son and got divorced because my ex just couldn't understand nor wanted to understand about what I was going through. His solution was oh just get over it and go get a job. (True supporter he was, haha). I truly feel I accumulated all of my diseases from stress. I was never in a car accident or never hit my head and just last week I saw a Doctor who said whe absolutely believes that and if I can start doing yoga I will get better. I'm out of a toxic relationship and although this hole in my heart for my son will never, ever go away, I'm going to go to a work out place this Thursday and they are going to show me around the yoga studio and I'm going to pay for it even though I could use that money for my kids, I know if I could get one ounce of who I was before I married someone I wasn't really even in love with, it will give me some hope. I'm sorry for going on and on but like so many of us have said even though some of us have the same diseases, it seems to be different for all of us. I just learned that stress can truly cause all sorts of bad things or if you have family members that have passed the disease on but that wasn't my case. It was just stress, doesn't that sound so stupid? Anyway I hope you find something or one Doctor that helps and believes you. Good luck to you but know there are so many of us out here feeling pain also. That probably doesn't help, I would be like yea well I'd rather somebody else be in pain and not me. Lol