Can anybody relate to these symptoms? Is this fibro, rheumatologist is undecided

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

[Dizzytwo]

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

[Hidden in reply to Dizzytwo]

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.

[Kaycox1 in reply to Hidden]

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

[Hidden in reply to Kaycox1]

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

[Broadfield in reply to Dizzytwo]

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😊😊

[Hidden in reply to Broadfield]

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?

[Broadfield in reply to Hidden]

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!!! 😮

[JGBH in reply to Hidden]

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.

[Hidden in reply to JGBH]

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 🤷🏻‍♀️

[JGBH in reply to Hidden]

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.

[Dizzytwo in reply to Broadfield]

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 😊

[Broadfield in reply to Dizzytwo]

Yep😂😂

[stollerydd in reply to Broadfield]

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.

[PurpleRoni in reply to Broadfield]

May I ask what the doctors were looking for when you had scans? What did they actually see in order to diagnose?

[Broadfield in reply to PurpleRoni]

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.😊😊

[PurpleRoni in reply to Broadfield]

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.

[BottomleyPotts50]

Hi there I recently have been getting a pain behind my right eye. Tends to happen when I am very tired, under pressure or stressed. Going to keep an eye on it (pardon the pun) and if I’m still getting these symptoms in a few weeks will report it to dr. Any new symptoms you should seek medical advice x

[Hidden in reply to BottomleyPotts50]

I feel like I’m annoying my gp but you’re right, I should flag it up

[Dizzytwo in reply to Hidden]

Hi there, if you've not already done so maybe you could try keeping a diary for a few weeks and show it to your GP on your next visit. Just a thought xx

[MALC19]

Hi i have had ME for nearly 30 years after having near fatal strep tonsilitis, put into isolation for approx 6 weeks to 2 months. So know huge amount of symptoms. Was also diagnosed fibromyalgia May 2016 by hospital Rheumatologist. The eye issue is called photophobia where back of eye aches in lights so where sunglasses most of year. Brainfog & other memory issues. Muscle aches and pain most of body, stiff spine, burning pain shoulder blades, both arms (hardly any elevation) painful leg muscles, as if they cannot carry me as they are weak, Raynauds disease in both wrists, have wrist straps for both from hospital, cervical spondylosis back left handside of skull radiating upwards to back of left ear, use hot wheat bag top of shoulders and round neck. Insomnia medication Amitriptyline and pregabalin. Painful finger joints, use stress ball. I also have a TENS machine that is a godsend but not everybody can use them if they have heart issues but instructions give you warnings. Have a hard spiky ball as suggested by pain clinic that you roll against wall where your pain is that does help ease pain. I did use feldene gel that was really good and had antiinflammatories but can no longer use them due to colitis.

I do have a lot of other medical conditions too but they are nothing to do with ME and fibro.

I have typed all my medical conditions, types of pain & where, medications etc and how i feel on individual days and had copies made to give to doctors and consultants when i see them for the first time which forces them to read it for any relevant info that they need as guaranteed you forget half of what you want to say when facing them. You can also get an app on your mobile too so i have that too.

Hope you start to get some answers and help for your pain very soon as it really is exhausting and debilitating. Good luck.

[klr31]

Have you had vitamins checked, like B12, D, ferritin and folate?

Karen

[Hidden in reply to klr31]

I’ve had every test imaginable 🤷🏻‍♀️

[MALC19]

Hi there,

I have a huge amount of symptoms as have both ME and fibro and am longtime sufferer.

I have huge amount of arm wrist, fingers and wrist issues, only to name a few.

I have been under pain clinic for quite a few years now as some of my issues are very rare.

I have Raynauds disease in my wrists and fingers on both sides.

I get pretty much same symptoms you have mentioned.

Get your GP to check to see if it can be this....it can come and go but i have wrist straps for L & R but you have to have your hands and wrists measured properly for them by occupational therapy.

Hope that helps.

I also suffer with back of my eyes aching and they water and vision at times goes bit weird, as if you have a floater in your eye.

It is called photophobia was diagnosed by neurologist.

I wear dark sunglasses all year round (do get some strange looks)😂😂

Google both of these conditions to see if they are the symptoms you are getting, it is worth a look and may help 😊😊

Good luck hope it gives you some support and it will help get a diagnosis.

Let me know hoe you get on.

Take good care

😊😊

[MALC19]

Forgot to say bright lights affect it quite severely, so we only use uplighter lamps with low energy saving bulbs.

Sorry brain fog 😂😂

[Hidden]

You know what, I’ve been saying for a while I have light sensitivity. It was really bad in summer.

[MALC19]

A lot of my senses are affected....sight, sound, touch, smell and taste, all on overdrive.....my bedroom is my sensory haven....blackout curtains, no noise, soft body pillows both sides....looks like somebody is permanently sleeping in my bed 😂😂 also a bed rail to help me get out of bed plus v shape pillow when i am sitting up...when i have a long soak in bath it saps my energy so husband lifts me out then i lay on my bed for next few hours with towel underneath me in darkness or just quiet tv on or little lamp with low energy bulb, it really helps especially the eyes as so painful to point of watering.

Please make sure you speak to GP /medical person as yours may be different to mine as we are all different but at least with medical names it may be easier for you to research and get a definite answer.

I do get pins and needles also all the time in different places but i know mine is not a serious problem but you should definitely still get checked out for process of elimination.

Hope it all helps