Lupus and fibromyalgia : I am seriously wondering... - LUPUS UK

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Lupus and fibromyalgia


I am seriously wondering if I have lupus and fibromyalgia after reading up on both of the diseases. I don't get joint pain as such but aching painful neck, shoulders, back, jelly legs and arms, heaviness/lead feeling in my arms and legs. I can't hold my arms up for more than a couple of seconds before they feel so heavy, I have to lower them. I now avoid stairs and slight inclines due to pain and jelly feeling in my legs as well as the aching and aching back when I walk. My symptoms seem to have got worse over this past few weeks. I don't think the damp, cold weather is helping either as my hands turn purple and I have struggked to keep warm lately. I am driving myself mad as I have tried pain killer after pain killer aswell as naproxen which have no effect on me. I am so worried. I get fobbed off when I see the g.p. And I swear they think I am a hypochondriac as I am always up the surgery. I need help before I go completely mad. It is uncomfortable showering having to lift my arms and legs, brushing my hair is even hard work due to the achy, heaviness in my arms. I feel like a cripple. I have been took off e.s.a. And told I am capable to work which is causing me so much stress in being forced to sign on to j.s.a. I am in a right mess as I know I can't work. Believe it or not, I scored 0 and was on e.s,a. Before being diagnosed with lupus with mental health problems. Surely lupus makes my condition 10 times worse. What the hell is going on. I have no housing benefit as that has been stopped also. Had no money since 1st November. Housing, I am trying to sort out as I am now on j.s,a. I am doing a mandatory appeal at the moment but in the meantime don't have a penny coming in. First lot of j.s.a. Isn't due until next Monday. In a right mess and would be stuffed if I didn't have my mum and we both live together. She is having to support me and it's so bloody wrong. Sorry to rant on but I am in a right state.

12 Replies

How old are you? I've just read back through your posts over the past few months and you have mention symptoms at various times which are all typical of polymyalgia rheumatica (PMR) - especially this today "It is uncomfortable showering having to lift my arms and legs, brushing my hair is even hard work due to the achy, heaviness in my arms" and you have mentioned tinnitis and other things in the past. If you are over 50 then it is a very really possibility. PMR and fibromyalgia can be very similar and many GPs can't tell the difference but there are several differences. The primary one is that PMR responds to a moderate dose of pred - providing it is used properly and not just given as short courses as you have been. That just makes the effect poorer.

I realise you don't have a good relationship with your GP - but you obviously are under a rheumatologist to have a lupus diagnosis. You COULD call his secretary and ask if a review appointment could be brought forward. Or you could make an appointment with the best of your practice and ask for them to arrange it.

I am 48. I have read up on lupus a lot. When I was in my teens, I had glandular fever and chicken pox. I have always got severe mosquito bites when I have been abroad, I got salmonella, rare form from the Nile air when I went on a Nile cruise and dysentery in India through mistakenly brushing my teeth with the water but didn't swallow. I have read that glandular fever can have a lot to do with lupus. I just don't know what to do anymore. I have had my benefits stopped due to apparently scoring zero points but I was on e.s.a. For my mental health beforehand, I now have lupus and have zero. How do you work that one out. I have been forced to claim Jobseeker's and look for an 8 hour job 15 minutes from home due to my fatigue. I am disgusted and appealing. How woukd I find an 8 hour job anyway. The job centre have been very supportive though as have evolve who I have got to do a food hygiene course with them on Friday as my c.v. I has so many gaps in it. I was always sensitive to fluorescent lights in my first job at 16 years old and suffered with severe migraines. I had problems with my neck and shoulders also which I saw osteopaths and chiropractors in the end. All this makes me wonder if this has been going on for years. My tinnitus has got so loud, it is unbearable. My mouth is permanently dry, no matter how much I drink and I have hot sweats occasionally at night. I have ranauds which I have had since birth. The list goes on, sorry for going on and boring you. Xx

Not boring at all - but you need a competent rheumatologist because your symptoms are very typical of autoimmune disorders in general, not just lupus. Without a referral there isn't a lot you can do though.

I have only seen rheumatologist once which was my first appointment. second appointment was with rheumy nurse. my next appointment isn't until February 21st. my condition has got so much worse these past few weeks and not having regular appointments /seeing the man himself, it's not doing me any favours in maybe getting more medication and maybe tests I may need. they are so busy I suppose but i am getting hassle from d.w.p. and it's stressing me out which i know makes lupus worse. xx

Tell DWP you need a specialist appointment and ask if they can facilitate it. They can only say no. Your GP surgery has obviously drawn some opinions about you and is letting it direct their approach to you. Of course an unwell patient is there a lot! And I'll lay odds that since you have a mental health history - they are seeing that instead of anything else.

Have you anyone who would go with you to a meeting with the practice manager and help you explain your problem? Or, as I said, is any of them better towards you? If not, is there any chance of changing practice to someone without preconceptions?

And do you have a contact phone for the rheumy nurse? The nurses are usually very good at identiying the patients who need to be brought forward to the specialist. If you are getting worse then she needs to know.

my mum can come with me. I can never get into to see the g.p. who first sent me to see the rheumatologist. I have got contact number for rheumy nurse and I am going to give them a call again on Monday. yes g.p.s. do use your mental health issues against you and totally agree with what you have said. I have used numerous surgeries and everything on my records so each surgery knows what I have been like in the past.

As I read this string of comments I am beside myself because I was beginning to think I was a hypochondriac myself! Or rather, doctors were beginning to make me think that way!! 😢. I have the exact same symptoms except I haven’t been diagnosed with lupus (although tested multiple times). When you mentioned the tinnitus is when it blew me away. I hear a humming/factory/motor/oscillating hum almost always that no one else hears and I have to decide, sleep with a fan that 100% causes nighttime migraine, or run a video on my phone all night with headphones. 😕. The heavy arms, fibro, chronic migraines, excruciating neck/shoulder pain, fatigue, I could just go on. But my bloodwork says I’m normal. Just low D, B12, occasionally some other stuff is off but no antibodies. Any help would be immensely appreciated.

my diagnosis began when I first went to my g.p. with severe fatigue and muscle aches. my arms feel like lead if I hold them up to do things like brushing my hair. my legs go to jelly if I walk up a slight incline and the breathlessness with it. xx

I actually had an appointment today with my GP specifically because of pain in my shoulder and feeling so bad the last couple weeks. The pain literally was a 9 on a 10 scale. I’ve been going to the chiropractor and massage therapist twice a week. I wanted to ask him about this but his answer was that I have neck problems and gave me a steroid shot. 😕

I have used osteopaths, chiropractor about 25 years ago due to neck/shoulder/back aches. maybe this was the start of the lupus. who knows.xx

my g.p. surgery see me as a pain in the arse/hypochondriac. hate keep going up there and they don't help as they haven't got a clue. xx

Oh my! Is the tinnitus related to Lupus? Sometimes mine is so loud I think I am going to lose my mind. I can barely hear! My mouth is dry also, but I attributed it to the meds. I have found that Biotene Lozenges really help. I also got the mouth spray, but the tasted gags me, so I don't use it. They also have mouthwash. You might try it. I was getting terrible night sweats until I got Botox injections for my migraines. Now the night sweats are less frequent. I have been sun sensitive since a teen and light sensitive for many years. I am now 67. I see a Chiropractor for my herniated discs in my neck which cause some of the migraines (I have 2 types). I also have chemical sensitivity, which caused me to have to quit my job 16 years ago, due to people wearing cologne and scented products. Yes, I believe I have had symptoms of Lupus, for many years. The onset, which got me referred to a Rheumy, we believe was triggered by injections I was getting for high cholesterol. They worked amazingly for cholesterol so I guess it's give and take.

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