hi 👋
Hope you’re all doing as well as u can
has anyone had both Fibro fog and long covid?
I don’t know which is affecting me I have more issues with word finding and when speaking and writing how long does it last goes then affects me random I had issues trying to read consultants pain score thing did not make sense until partner broke it to basic so I got it this is unacceptable now six month off sick go no help I only have cog therapy in month
If any one has advice welcome 🙏
thank you
Have they done a MRI of your brain? Just to rule out there is nothing suspicious going on . Also some meds do cause cognitive issues like word. If it is effecting you speech and your understanding I would suggest to request a brain scan . Just to make sure to be on the safe side.Also , just wondering do you have migraines?? Because if you do how bad are they ? They can sometimes effect your cognitive speech thoughts and writing.
When I started having severe migraines I had them very , it effected my right side of my body and my face , it effected my speech , was not able to write anything whatsoever I wrote was in a jumble, lost all my counting capabilities, I used to be excellent with Mathematics. Lost all of my spelling skills as well this was my best skills as well. Totally robbed it as well. Was not able to read either as I was not able to understand what I read.
I did not have any cog therapy at all. But I trained myself, daily by training my brain each day spending doing fast /speed word spells on game, short spellings all 3 and 2 word spellings at first then slowly built up to 4 word and so on. I used various types of word and spelling app(don't spend any money on them) all free games . Did maths games .then slowly built up my vocabulary by building larger longer words with shorter words, there are also ones that did nouns and pro nouns as well, they are excellent when you want to progress on to that. There is lots of word games spend on different ones about 5-10mins each just to brain train your brain .in general 30mins a day yes it is alot of time spend on the screen but take short breaks in between.Your brain will gradually relearn all these things again and you will gradually build it up. It will come back to you. I would say for first day start with 5mins because your brain is not used to it . It will take time to process . Once it gets used to it you will find it is ok. Once your vocabulary has built up sufficiently you will find that all words will come back naturally. I don't play them any more . Oh yes , word games are great it also helps you remember to spell as well because of repetition.
I do get occasional brain fog where I cannot remember a name of a word which is quite normal it will come back to you . I am sure Cog Therapy might help. Hopefully it will be of some beneficial of what you are going through.
Hope it will be of some help .x
Hi knitsewpurl
Thank you for reply will try these when not so fatigued yer thought were bad headaches but doc said it is migraine with sparkles on left with blurred vision affects left side all body head and hands like they stiffen and seize making writing very difficult doc said will improve in time it common with Fibro and long covid. 🙏
Have you got a date yet for your Cog therapy? Knowing NHS it will be ages before you get a date through.
Try wearing dark glasses in doors as well as outside. Especially on bright days light these . It will help. I know will be very awkward but will help calm down the light sensitivity that is causing the migraines .if possible on days when you feel you want to rest or shut your eye just close your curtains and make sure you are in a darken room. Migraines are not great , they do make you feel awfully tired and fatigued. I would sleep for days on end with them. Combined with SLE it was the worse Fortunately,I don't get them as bad now they are very well controlled with meds. Been on Topiramate for many years now something like 20 years. My dose is quite high they have queried it with my neurologist a few times and both times they have come back ok. They control my migraines really well with my current dose I am on now , I have tried to reduce it but it triggers my migraines which it not worth it. You need Neurologist to put you on it as it is a consultant prescription drug if your migraines get bad. Suggest you try preventative type migraine drugs there are a few around . They have nasal spray, tablets, and injection version. Tablets are more commonly found off the counter. Nasal spray and injection are usually on prescription. With migraines you will normally get signs /aura when you are about to get them .
Mine is I get like stars crossed lights and pain at the back of my neck always the right hand side.
So , I suggest is to create a diary, for your migraines also record what food you ate that day would be helpful. And whether that day was a very sunny day and whether you did any thing exceptionally that day outside. Or sometime mensuration cycle can cause and trigger migraines as well whether they are per cycle or post cycle .
There is alot of migraine diarys out on Google pick one that suits you. And keep a record for a good year at least you have a good record to show to your consultants when you see them at any time to tell them you have an issue they can see you have been keeping a record.
They tried to diagnose me with fibromyalgia but I really don't have them , and I have proved it that I really don't have it. Because I don't !!.
I recently was diagnosed with misalignment of my spine by Spinal Consultant (privately)despite being seen by Spinal team and pain Consultant that said that I had fibromyalgia I repeatedly told them I don't have it and it is my spine and my hip there is 2 separate issues. They wanted to dish out to me tons of meds to the extent of CBD I said a firm NO to them. Got so fed up , when I was discharged the 2nd time by the physio after 3 sessions ohh.. she was so lazy late for appointment for 30min she was on the computer not sure what she was doing even receptionist was not impressed with her(physio). Oh yes , she said I am going to refer you to the hip team it is now 6 months, lol. I could not tolerate with the pain any more. Said to my hubby we really need to see someone as I could barely walk far doubled up one side my spine the other my hip.
So , when we saw him (consultant) he dug up my historical X-ray (2022) it showed misalignment of my spine straight away he saw that even we could see it 🤨 . You know when I was told of the result by Spinal team I was told on the phone!! Not face to face🤔 then when I ask the Pain consultant that I wanted to view my X-RAY he came up with the excuse that he was not able to excess it . What a rubbish! So , I just had my caudal epidural yesterday, unbelievable the change I am able to stand upright for once . I was not able before.
As for my hip, I saw the consultant (private)1 week plus ago , had all my scans-MRI ,CT and XRays . I am seeing him with tom morning for results. We do know what is wrong with my hip as he took a look as well with my historical XRay that was also taken. In 2022 -It showed hip displysia with very little arthritis, also rotation on the lower limb. incompetence of doctors and Physios for not picking this up , Physios were killing my muscles and bone in leg with the wrong exercises. I was absolutely in agony each time .I refuse to do certain exercises because of the way it was effecting it.
So he wanted to see what damage it has done and severity it has caused and how bad it is now compared to 2 years ago.
So what I am saying is always go by your gut instincts and know what your body is telling you . Some of those NHS doc or physio have got no clue and they don't listen.
One funny thing is the Hip consultant was shock and shook his head when he head the story. Was even shocked when he saw the X-ray that they did not diagnose me correctly the best part was when he assessed me he only took 1 look at me and ask me you got pain in your knee ? Both my husband and I looked at each other was shock how did he know , I said yes it was then he revealed that he can see that my lower limb is rotated. 2 sets of hip Physios and no one actually raised this? No doubt my 1st set was actually very concern about me they were on the verge to refering me to a consultant when I got cancelled by Spinal team 🤨.
Both of us really in half of mind to write a letter to all the doctors that we say plus Spinal team Pals for the biggest flaw they had done on 2 counts 1 my back and 2 my hip. This is not the first time they have dodged on my case they also bodge my cataract eye op as well .
Hi knitsewpurl
Yes it’s tomorrow thank you arranged by long covid team I have done questions ready now fatigued more thanks for tips I wear coloured clip on lenses in doors to help and sunglasses outside sorry to hear all you have gone through and hope you have better luck sooner with medical staff. 😀👍🏻
Also brim hats will help the light from shining through the glasses when you are outside as well. hope all goes well tom xx
Hi. Sorry you are having such a tough time. Since the end of September I’ve not just had my lupus-like illness, APS & Sjogrens but I caught a cold and ever since then I’ve been much worse. Lots more fatigue & pain & cognitive problems. Hoarse voice, swollen glands. Just sat in a chair for most of 4 or 5 months, all I could do apart from getting food and showering. I couldn’t comprehend the easiest of documents. But it seems to be a bit better at the moment. 2 GPs have queried long covid on top of everything I normally have. Others have said it’s some form of viral or post-viral. It could even be a flare-up of my autoimmune diseases. Basically no one knows.
I had been having cognitive behavioural therapy during last summer but they say I need some more now as I’m depressed again. But there is a very very long wait.
I’m sorry that I have nothing that can help you but at least we both know we are not alone now. I really hope you start to feel better soon……….Judi x
Hi jumper99
Sorry to hear you havin rough time and wish you all best with next session hope helps I had similar issues saying virus after they tried antibiotics and more antibiotics and then had flare so they stopped them then different GP said needed to see me and diagnosed long Covid and apologised now fatigue is worsened and brain fog but take each day as it comes what can you do but ride the ship of life! Take care could just improve like the weather😀👍🏻
How long until this awful moon face goes away??
Mycophenolate or Azathioprine ?
covid
taking too long to diagnose, do I or don't I
