Hello! I started with chronic fatigue back in June, no other symptoms other than headaches and pain behind my eye. These flare ups kept happening and by July my wrist was in a bandage because it started hurting.
I mainly get the pain on the right side of my body in my arm, wrist, hand (sometimes feels numb) my knuckles (feel swollen but not), my hips (they feel achy) and my right calf goes very tight. but I wouldn’t say is constant pain, it’s like episodes of up to an hour then stops. A lot of the time it feels like nerve pain. Then the next episode will hurt somewhere else.
My hands have started randomly feeling like they’re burning but they’re not hot to the touch. My feet feel like they’re in ice buckets.
Yesterday I got pins and needles down one side of my body and in my head and down my face.
There are some weeks (rarely) I have no symptoms and my energy levels are not like they ‘used to be’ but I’m able to do everyday tasks. Some days I can’t move off the sofa.
My rheumatologist has said he thinks it could be early lupus or fibromyalgia, but my question is: can anybody relate to these symptoms, does it sound like fibromyalgia because even the rheumatologist wasn’t sure.
It definitely flares up when I’m anxious or if I feel depressed.
Thank you x
Fibro and menopause symptoms
Do these Fibro symptoms- improve?
Fibro pain pelvic pain are they related
Hello, is muscle weakness a symptom of fibro
Hi there, I can only answer from my own experience. I've had fibro for 35 years and all I can say is my fibro never behaved the way you described. I've never had my pain come and go in an hour.
I do suffer from anxiety and at times get some of the symptoms you describe like the pins and needles for example. But there can be loads of reasons why that happens IMO. Carpel tunnel or neurological for example.
Any kind of medication if you need it will be prescribed by your GP when you get a diagnosis. I do hope you don't have fibro. I do hope you don't have anything wrong. I think it's best to wait for your results good luck xx
Momo
Thank you! I have a follow up appointment with the rheumatologist in 3 months. I think he’s hoping I have more symptoms to give a formal diagnosis but before I left he gave my a leaflet on Fibromyalgia which made me feel like he thought it was more that. But this limbo stage is making me more anxious. I mention medication as my doctor has prescribed me Gabapentin But I’m worried to try something when I don’t have a diagnosis.
Hi, I have Beeb having the same symptoms for three months. I get pins and needles and burning pain. I sometimes get a rash to my face. I can also have stabbing type pains to random places mostly my legs. I am on amitripline but I wonder sometimes if it exacerbates my sensations or if it’s because my body is relaxed. I have paid private for brain and Cervical spine as I was convinced o had ms. It was all clear. I am having blood test to see if my antibodies are raised ANA test and they are looking at lupus and remutology levels . Trouble is there are over 100 autoimmune disorders. But it’s just trying to look at the symptoms you have, if my levels are raised then they put your symptoms along with the levels and hopefully atoimmuine disorders can be ruled out. I have never been on so much weird pain and mood. I hope there will be more research out there soon! It can get lonely sometimes in your head. Good luck with getting some answers. Sending love x
hi Kay, sorry you’re going through this. I got to the bottom of my problem- it was my breast implants, they triggered an autoimmune response. I had them removed and I’m completely better. The body can have a similar response to coils, fillings and Botox - basically anything foreign. Hope you get the right help for your symptoms Abt get relief soon. Take care
Have you had a brain scan. I hope so. I have M.E. and Fibro. Awful fatigue for anything from a week to six weeks, pain in left side of head, face, breast and arm pit, pain in right lower ribs, all my joints and long bones, tingling in lower legs and feet, burning skin in patches on legs, numbness in feet, nausea, sensitive to light and noise, crashing headaches, tender scalp, dizziness, unable to walk without sticks and more stuff.
Everyone is having different symptoms so you need to rule out all possible causes with scans, bloods, and nerve assessment only then can you find the road that best suits your condition. You have to be persistent with the medical profession so that nothing is over looked
Good luck I hope you get some relief😊😊
Thank you! My friend has ME and fibromyalgia, her symptoms are very similar to you and she’s getting very little help which is so sad. Still waiting to have my MRI’s - I’ve read fibromyalgia and ms have similar symptoms too. I think the unknown is causing the more frequent flare ups. Anyone have advice on how to calm the nervous system?
Duloxetine 20mgs twice a day has helped me. I was checked out for M.S. although I do have some damage to the brain it's not MS . They say it's from migraine and small vessel disease!!! My dad had the same as me and was sectioned at 74years died at 76!!! 😮
Sorry to hear about all your problems. I too have so many similar problems and it's so difficult coping like that. I can't carry out simple tasks anymore, no gardening which I used to enjoy, no house cleaning, can't really walk very far and with the help of a stick. I do have other health issues (rheumatoid arthritis, osteoporosis, etc.) so doctors keep using the RA as an excuse for not doing any other investigations.
You mention waiting for an MRI scan, may I ask you is it for your brain? Did your GP suggest it or did you have to request it?
I do hope you will be able to get your MRI scan soon and wish you the very best. On-going pain is so debilitating. Keep safe.
I feel for each and every person in this group. My friend has suffered with fibromyalgia and ME for years and I didn’t understand just how much it affects your life until I started. I was referred neurology first as my doctor suspected I could have MS, because of covid it’s taking a long time for the scans.
I then had an abnormal rheumatoid factor test so I was referred to rheumatology - the consultation said there’s a possibility of autoimmune as my white blood cell count keeps dropping but I don’t have enough symptoms for a formal diagnosis. But he said as my pain is widespread it could be Fibromyalgia 🤷🏻♀️
Thank you for replying so quickly. I do hope you will be able to get help soon but with Covid it is going to take even longer. I will have to push for a brain MRI scan again or perhaps insist I need to see a neurologist before but my GP will say it's not necessary because I have RA and other problems so that's what can be expected! It will take forever. I already had to push for a lumbar and hip MRI scan in July and it showed I had/have pelvis fractures! The pain was excruciating as is the disability but all the useless doctors used my RA as an excuse not to do any more investigations! It really is shocking the way older people are treated by so-called medical professionals. I am 74 and used to be very active and independent, my brain still functioning well (most of the time, not so good when I suffer much pain), so it feels my life is over now, very depressing indeed. To be healthy is incredibly lucky. Best wishes.
Hi there
I see you tagged my name. I'm presuming your question/reply was for Clauds90 not me?
I hope you have a good day 😊
Yep😂😂
I have had full blown Fibro for over 20 years. Before that I had what I've called Fibro Stage 1, Fibro 2, and Stage 3. Because of my youth I was able to manage the first 2 stages, but I always knew there was something wrong with me, though lots if doctors said, no way. NOW you just described me. Obviously being in pain is less than fun, but the God awful fatigue is debilitating. People will look at me and say, hey, you look great today. Must be feeling better. Guess I'm getting better and better at pulling off the old con.
May I ask what the doctors were looking for when you had scans? What did they actually see in order to diagnose?
It was to rule out other causes and to check on my small vessel disease, which they say is slow in progression,. It found slight changes which they said was due to migraine rather than MS, that damage is more pronounced apparently. They can only diagnose ME and Fibromyalgia by ruling out all other possible causes of symptoms.
I was also tested for viral infection and my Toxaplasmosis levels, which fortunately have stayed stable and it's not attacking the brain.😊😊
Hi, I realise there are no tests for Fibromyalgia; that's why I was curious why so many on here mention having scans! Just out of interest: I had a brain scan in connection with migraines and they found what they call "Bright Spots" (they were white spots on the picture) which can indicate migraines or MS so I was sent for a Lumbar Puncture to rule out MS, which it did! That's the problem with diagnosis isn't it? No test to back up what we are all trying so hard to describe. If it's not visual, people tend not to believe it. Just makes a bad situation worse! That's why I am so glad to have found this forum: just talking to people who understand has helped me a lot.