We moved house at the end of August and I thought I was doing really well on the LDN (Low Dose Naltrexone), but evidently I borrowed too many 'spoons ' and now I'm paying off my debt! I've been in bed for a whole month now and I'm really fed up. At least I have 2 kittens to keep me company, and a good view of trees from my new bedroom. But even the kittens are driving me crazy today wrestling on my bed and jumping all over me!
It probably doesn't help that I'm still grieving for my dad who died last Autumn, but I feel waves of despair and thoughts of 'what's the point of it all?'. I've been so ill this year and it's all so confusing - I thought it must be the Lupus flaring but the ANA keeps coming back negative and yet I feel so rubbish. All over flu like aches, some joint pain, burning pains in my arms and legs, nerve pain down my left side, muscle pain and cramps, and terrible fatigue. I saw a neurologist who found a meningioma on my brain scan, but apparently this doesn't account for any of the nerve pains. He said there was no cause for it on the scans. I am wondering if I am developing Fibromyalgia?
I don't know what to do. Should I go see my new GP and explain all this? I had a letter saying I had an appointment at the hospital for nerve conductivity tests but the neurologist implied this would be a waste of time, (it was like he was just humouring me because I was angry that he couldn't find a cause for the pain) so I just cancelled it. Also it's a 25 min drive away and I don't feel well enough to drive myself there at the moment. I had hoped the LDN would help me more than it is currently doing. I feel at a dead end. Any advice welcome.
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Maya23
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It certainly could be fibromyalgia as both myself and hubby suffer from it although it presents differently in us and have flares at different times .
It is a difficult one to deal with but if you do have it a diagnosis won't help much in the way of meds etc but perhaps if you had a reason to feel as you do it might help.It can certainly give you all the symptoms you say in your post and there is a lot of help on the fibromyalgia site.The hu fibromyalgia forum is full of very friendly understanding folk which you can ask for help and advice or just an ear to listen knowing how you feel.Definitely worth suggesting gp gets you referred for fm assessment.
Thank you. It's good to hear from someone who knows about Fibromyalgia. I was feeling like I'm going mad! I have joined the FM site on HU and you are right it does seem very friendly and supportive. I think I'll see if I can get an appointment with my new GP.
Dryad, what a time you appear to be having. Its enough to send anyone to there bed.
I still think I've got more spoons in the bank so know where you are coming from there. But hopefully, at the end you have the house of your dreams and sounds like the view too.
Kittens are so cute, but hard work. I have 2 cats, Blackie and Molly and a feral cat who comes to me every day for food and to hiss at me! Charming. I just adore cats!
Tis is a terrible season for you with your grief and I send a virtual hug to help you.
One thing that might cheer you up. I had nerve conduction studies last week and I must say it was to most distressing test I have ever had. Hated it much more than MRI scans. Still its over and done with, results should be back this week.
Hope you start to feel a little better soon. I bet you would love to get up and go for a walk round to see your new surroundings. Try and will yourself better.
Dryad...i am so sorry to hear this....you were doing ok....i too, have progressed from lupus symptoms to fibro symptoms. The body is an amazingly complicated machine. I have not given in to the new symptoms yet. And , i am negative in bloodwork as well, but show a lot of the symptoms. I dont need a dr to tell me something is not right. I will continue to take my vit d, vit b12, vit c ( take when you have flu like symptoms, cold, sore throat---will alleviate) and my turmeric and formula 303. I have read in so many places it is our gut that is off causing these inflammatory diseases. I stil believe it is in our brains and genetically inherited too. I take probiotics and digestive enzymes and trying to heal gut with aloe vera. I am getting nerve pain throughout my body, so i take that formula 303 which is mag, valerian root and passionflora. All of which as you know are calming herbs. I put my feet in a tub of warm water with lavender when i had nerve pain in my toes. Helped. I put sesame oil on my head when i get nerve pain in my head. This also helps. Very healing oil.....it is hard work, and constant care, but i believe in it. Also, someone has suggested magnesium deficiency. I am trying my best to hold onto my hair right now because of itchy scalp which i am afraid will scar and hair will not grow back. I put sesame oil on my head daily. Sometimes overnight. Helps to sleep. Look it up. i hope you can find some answers and feel better!!!
Oh, and i believe it is connectd to anxiety somehow. Try those stress pastilles...seems to calm the mind. When i have panic attacks going to bed, i suck in them until i fall asleep. Helps a lot.
Thanks for the advice Natura. I ended up doing some EFT yesterday which helped me break through the anger and frustration and discover that it was actually grief coming up as depression ..so I phoned the Samaritans. It really helped to talk about how I was feeling and about my dad. Now I feel a little lighter (physically as well as mentally) and I've even been out of bed this morning. Feeling a bit more hopeful today
Dryad....i hope i didnt imply that you have given in to medicine. I apologize for my foot n mouth disease. I meant that i wasnt ready to do meds. I may have to someday if things progress...i am hoping to stay off as long as i can. Everybodies pain is different and probably a lot worse than mine. Stay strong! (My dad died many years ago. I have been thinking about him a lot and wondering if i could have changed the outcome of his life if i knew then what i know now. )
I am glad you had someone to talk to.
I walk outside everyday,..wish i lived in the country and not surburbia. Maybe someday. Sounds like your new home is lovely...
Don't worry I didn't get that meaning at all from your reply. SOrry to hear about your dad. It has such a profound effect on us, losing someone close, I had no idea until it happened to me. Take care xxxx
Sorry to hear you're feeling so unwell. I've read many of your posts before as the LDN treatment sounds really interesting and I've found I can't tolerate any of the usual meds. You've had such a tough year and have done brilliantly to get through it so well from what I can tell! I know it's tough to have your body give out on you and the pain, everyday, is difficult to bear but it may well just be that a good bit of rest is needed and then you can carry on improving.
I've been off work and pretty much housebound since May due to bad reactions to medications and like you have been worried by new symptom patterns. It's weird, because it is important to look stuff up yourself, I think, as doctors don't always think past the usual stuff they encounter, but I've generally had to rely on alternative therapies for help (and the one I've tried, healing, acupuncture, undoubtedly do) and accept that I just have to find a way to live with the new stuff.
Proper rest always helps in my experience, balanced with eating well and getting out for some fresh air and gentle exercise when you can. From what I've read, I think you already do all of this and have probably worked out more than I have about how to live with this illness, so I don't think I can really give you much advice!
Just know that the way you've been handling lupus and the posts you put up have certainly helped me and, I'm sure, others and lots of well wishes are coming your way!
Thanks so much for your support. I managed to see my new GP yesterday. She said I had a lot going on and it was no wonder I was feeling so rubbish. She' s given me the numbers of local counsellors (I'm still waiting for one to one counselling from the bereavement charity Cruse) and she's recommended that I phone up my rheumatologist department and try to get an earlier appointment than the one scheduled after xmas. She's written me a letter in case that's needed. I feel like I'm making progress again after feeling at a dead end. Phew.
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Fed up 
Fed up of new tablets making me feel so ill :(
Flare up & fed up 
So fed up
Fed up now :-(
