I am feeling completely overwhelmed and desperate. I was diagnosed with fibromyalgia just as we went into lockdown. I had been unwell for quite some time but kept going until I was eventually signed off work in January. Therefore, I feel I have been in lockdown since then. I have not seen my doctor since my diagnosis and I am worried about my main symptoms which is constant face tingling or numbness and lurking headaches which can suddenly be very bad. Over the last few days, my face has become red and blotchy and my eyes feel really sore. Fatigue is a big problem as I just seem to be so tired. I am taking medication that my doctor has prescribed. When will I feel better? Is there any light at the end of this tunnel? I have tried phoning FMA UK but due to Covid 19, no-one is manning the phones (understandably). I supposed to be starting work again in a week's time - I am a teacher - so avoiding stress and getting over tired is nearly impossible. I am at the end of my tether and don't know what to do.
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Ninapod
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Hi Ninapod, so sorry to hear that you are so overwhelmed with everything, it is totally understandable.
I have lived with chronic pain my whole life and after being totally immobilised due to symptoms at the age of 20, I visited my doctor to get to the bottom of things(I was beginning to believe it was psychosomatic). It was only 10 years and a few GP's later I was diagnosed with Hyper Mobility Syndrome, then after varying other health issues; in 2018 I was diagnosed with Fibromyalgia. I believe I have been living with Fibro. for quite some time and was taking the symptoms to be that of my HMS.
Unfortunately Fibromyalgia is a long term condition, try not to despair, it can be managed; though you really need to speak to someone professional, the symptoms are so widely varied I wouldn't like to give medical advice (I don't suffer from the face tingling, redness and blotching; have you tried an antihistamine as it dose sound like that could be an allergic reaction). There is so much good info. and advice here on line, I posted on here "My Fibromyalgia" the other day and people were saying it was a good description if you want to look that up.
The best thing I can advise is that you stay as positive as possible(easier said than done I know), Pace your activities, do what you can and do not give yourself such a hard time when there is something you can't achieve(again, easier said than done). Remember and be kind to yourself.
I suggest you try keeping a diary of: symptoms/times of day they occur/food and sleeping routine, this along with your mood all have contributing factors; this might be useful when things resume to take to GP/Rheumatologist/Physiotherapist. I recently completed a Pain Management Programme, I'd recommend it to anyone, worth asking for a referral(I think this has to go through a specialist instead of your GP.
Know that you are not alone, I am sure you will receive some great pointers from the wonderful people on here.
I really hope your symptoms subside sooner rather than later and good luck with everything.
I would definitely phone your GP early Tuesday morning. They should call back and decide if they need to see you.
Do you have a pharmacy open now you could phone? A retail park with a Boots maybe or supermarket Pharmacist? Have you read the leaflet with your new prescription?
Could you be experiencing any adverse side effect of this medication? What are you on.
Not sure why you are expected back at work, do you have many children of key- workers ?
What blood tests did you have prior to diagnosis?
Have you been tested for any Vitamin deficiencies?
Hi, sorry to hear that you are struggling so much . It sounds like you need to try arranging a gp appointment to discuss your ongoing symptoms - many surgeries are offering phone or Skype etc consultations.
FMA UK helpine 0300 999 3333 is operating as normal Mon-Fri 10.00-4.00. if you still experience any problems getting through can you pm me and let me know so I can check into it. Xxx
Thank you for replying to me yesterday. I am not feeling quite so desperate and I am waiting for phone consultation with my doctor today. I am also going to try the FMA Uk helpline. Thank you once again for listening. X
I have Fibromyalgia and for me it’s all about learning to cope with the symptoms. I am not going to lie to you as some days are not great but then other days it’s easier to manage the pain. Did you get a document about Fibromyalgia when you were diagnosed? These sites help too as you don’t feel so alone.
I hope you are having a good day and good luck with your phone consultation.
It is hard learning to adjust to Fibromyalgia. If you are on meds they may not always help so sometimes it is trial and error. You may be able to get telephone appointments with GP, which is what I do. Things like Propanolol or Amitriptyline can be good for headache prevention. I was on Gabapentin for nerve pain but actually made my face worse weirdly.
You will have to chat to our employer about phased return as been off for while.
I can only work part time now due to arthritis as well and luckily my boss let's me have a flexi contract but obviously teaching but complicated.
The main thing is rest when you need to and pacing activity. Its easy to keep pushing as the housework needs doing or the DIY but this only causes more problems in the end.
Hopefully with combination of right meds and learning to accept when you need a nap you will get through it.
I had that tingling ,numbness and cold sensation on and around my lips ,from under my eyes , down my cheek bone , Its not nice and very worrying indeed, I went to GP ,and sent to hospital , couple off years ago ,thought I was tak6 a stroke, I didn't, ! Was sent home and months later sent to a specialist, Neurology, They done a memory test ,and it wasnt good , This could be a side effect from medication if you are taking any .
I have a post on here about that,
I agree with fibroska, trie anti histamine, wont do you any harm .
I'm sorry to say , the tired feeling is normal with this condition .
My wife suffers with fibromyalgia as well as other issues and often has the tingling and always the headaches. Being her husband I don’t know how painful it is but I can see the pain and discomfort and have to remind her to slow down, take it easy and rest.
I have found that it helps to keep a record/diary of things/symptoms that occur for when we see the doctor because too often something is forgotten till after we have seen the Dr. This is especially useful when your medication is changed. We discovered that Amitriptyline is no good for my wife but others have no problem with it.
As the others have said this is a long term illness and unfortunately there is no quick fix!
Remember to take it easy, if you have a partner talk to them about what is going on and how you are feeling. Fibromyalgia is just as hard on partners and sometimes they see things going on that you are not aware of.
Hope you Dr’s call is positive and helpful. Stay safe, keep smiling and hope today is a great day for you. 😁
Your symptoms could sound like shingles and worth a talk on the phone to GP and maybe upload a picture for GP as if it was this it can be treated but is very painful over nerve routes some of which can affect the face/eye. We blame everything on fibro unfortunately.
Most of us have to try different medication until we find one that works for us. I have been on 4 different meds over 6 years. Your symptoms could be side effects and they sometimes pass over time.
As for the tiredness there is a lot of information and tips on here about getting a better nights sleep. Don't over do things and take a rest whenever you can. My doctor still tells me off and says most important thing is to pace myself. I know it's easier said than done.
Thank you everyone for taking the time to reply. I had a good chat with my doctor and someone from FMA UK did phone me back. I am trying to stay positive and accept my condition. I know it will take time to sort medications etc. At lease you all understand - my boss has been very critical of my doctors saying that I have a minor ailment and they haven't made me better - why can't they give me steriods like her aunty had when she had a pain in her arm?! She has no idea and looking at me today, I look no better than when I was originally signed off in January. I am going back to work next week on a phased return - hopefully everything will go ok. Thanks lovely people once again.
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Desperately wanting relief from pain :( 
Desperate for advice!!!! 
Desperately seeking me !
I feel like I have failed 
Desperate for adequate medication.
