is it CFS?
Posted , 5 users are following.
Dear community
Can anyone help me?
I’ve been living with fatigue now for almost 2 years which started approximately 2 months before I was diagnosed with Cancer, at the time. I went on to have the tumour removed and received further treatment through chemotherapy which all ended about 14-15 months ago. Since then I’ve continued to live with a mild form of tiredness and fatigue which didn’t affect my life too much as well as short term memory issues, since the chemo.
Until recently I wasn’t too concerned, believing that it was all part of getting better, however about 5 weeks ago things took a sudden turn for the worst and completely out of nowhere. Every day has become a struggle since. I’m concerned that I may have a form of Chronic Fatigue.
At the moment I am having tests done, the recent blood tests haven’t given any indicators to what this could be. I believe that they checked the lot, including signs of anaemia, thyroid, diabetes, hormone levels and for cancer markers, as well as cell count and organ function etc.
To describe a new average day would go something like this:
I get up having had 7-8 hours sleep, feeling tiered and exhausted. By around 8:30 I am sat at my desk at work nursing a cup of coffee and trying to go through my emails. By around mid morning my muscles (arms and legs) start to feel heavy and tingle by lunch time they are aching badly and movement becomes slow and stiff. On days that I try to push on, the muscles start to burn. I go home and lay down for a period of 2-3 hours, often I will sleep. I wake up still feeling tiered but my muscles are better and I can do light activities in the evening.
Any form of activities such as house work or walking to the shop has become exhausting and need to rest afterwards. I try to plan my days and any activities to be completed in the morning, which appears to be where I am at my best due to muscle pains. Walking a few miles is all I can manage; if I push beyond that I start to feel wobbly and unbalanced. I do get headaches and I am sometimes sensitive to light. Most daily activities and tasks leave’s me short of breath.
I’m no longer convinced that the fatigue experienced is part of the natural recovery process. I don’t understand why the existing symptoms have suddenly become much worst. Other issues I have is abdominal pains, mostly around the appendix area which if I am honest started several months ago, which was checked out back then and no cause was established. Until recently the pain although came on sharp became a dull ache and I put it down to pulled muscles. The pain is back and has been for several weeks.
Other issues is concentration, even with activities and tasks that I enjoy. Reading is becoming problematic as I cannot recall what I’ve just read.
Does anyone have a similar story to me?
could this be CFS?
Thank you for reading
Andy
3 likes, 83 replies
andrew_08416
Posted
a large number of the symptoms appeared to have now calmed down since the arrival of the face rash. Muscles still ache but no longer do they burn, they are still weak and joints mainly in my knees are painful. Although I am still very tiered, I feel less fatigued and able to finally cope without having to lay down during the day. I still cannot do a great deal during my day but hopfully in time.
Also I decided to knock the daily walking exercises on the head at the same time the rash appeared which may also have something to do with the muscles not burning so much.
So where are we today..... Still undiagnosed, I am affraid.
Although my GP strongly suspects that what this is, is indeed Lupus despite last Friday when the Lupus test results came back as negative. apprently that is a common thing!!
Today however, I had my CT scan which was arranged by the oncologists just to further rule out any cancer return. They and I did not expect that this is the cause.
However... The radiologist advised me that she needed a doctor to review these scans immediately due to do with something in my lungs. after a short moment I was sent home with no explination. My next Oncologist appointment is in 3 weeks time so I've asked my GP to take a look at the scans for me.
At the moment I am not worried. out of the 3 cancer markers which I am rutinely checked for only one was raised on the last test being the LDH which proved an inflammation was happening someing where or in multiple places within. The others were all consistant with previous tests and are normal. Hence the no cancer return concern.
I've been reading further what this could be with regards to auto immune issues. and Lupus effects the organs including lungs which will show up on a CT scan.
Now i've a face rash similar if not identical to the Butterfly rash associated with Lupus and very few other dissorders. (really is a short list which helps)
The confirmed inflammation (LDH)
most of the symptoms
CT scans to show organ related issues (hopefully temporary)
but a failed blood test result - which is apprently common!!!
despite the bloods I believe were getting close.
Its now gotten to the point where I think I'd welcome any diagnosis just to get treated and for the pain to go away.
I'll still keep updating this blog, Its not confirmed either way and its where I started in the first place.
Many thanks
Andy
Beverley_01 andrew_08416
Posted
Wish I could say fantastic news, maybe one day : )
Hope that as you say the ct scan isn't an issue and if it is lupus, that Is the cause. It seems such a battle to find out what causes our symptoms which, in lots of ways are similar, the same. I've seen the butterfly rash ( not everyone with lupus gets that I believe? ) were you taking the vitamin D when the rash started? I cant remember. I think like you, I just needed someone to tell me I got "blah,blah,blah" to help me through.
I think you made a good choice with the walking. Its hard to drop things we enjoy but, if you can see it as temporary it helps.
Also, thought I'd replied to yr last message but, doesn't seem to be there? Oh well!
When do you get ct results?
Beverley
andrew_08416 Beverley_01
Posted
The radiologist told me about my lungs today. the tests were ordered by my oncologists who I am seeing again at the end of the month. but with the lung issue I've asked my GP to also take a look and let me know his thoughts.
I believe your correct with regards to the butterfly rash. Its not too much of a pain if I am honest. being a red head I often look red in the face anyway :-) but when it flares up it itches and burns - just another thing I guess.
If it wasnt for the rash, i think we'd still be scratching our heads wondering what on earth this is.
I'm hoping to get more info in the next day or two. I bet it will be more tests. :-(
x
Beverley_01 andrew_08416
Posted
Years ago,before cfs/me, I had red burning rash on my face that I narrowed down to a milk intolerance problem. It flared up every time I had a coffee! I think the caffeine speeded up reaction. I cut out coffee-instant result, rash stopped but, came back and appeared then after milk of any type after a couple of months. Just don't have It at all now. It was irritating would itch or be sore or burn and it is harder to Ignore because its there when you look In the mirror. I know mine is from a different cause but can totally get how frustrating it all is! Hope you're going to get some answers real soon.
Best wishes
Beverley
andrew_08416 Beverley_01
Posted
I hope so too. Can't wear my glasses when the rash is misbehaving. Otherwise I don't think it would actually bother me.
Sure when angry it's a deep red. But otherwise it's a light sunburn feature on my face.
Think I'm growing to like it a little lol
Beverley_01 andrew_08416
Posted
Ha ha : D
Do you put anything on it to calm it down?
My face has gone super dry and I'm using heavy duty hand cream to try relieve it. Not sure what brought that on
plus I've overdone things although I feel proud of myself too. I did a 1st aid day course which was interesting and useful but, has totally wiped me again. So hard to balance things when you have such conditions. Sometimes its all trial and error.
Be good to you
Beverley
andrew_08416 Beverley_01
Posted
Give it a go you never know. and its only a couple of quid :-)
Beverley_01 andrew_08416
Posted
Beverley
andrew_08416 Beverley_01
Posted
Beverley_01 andrew_08416
Posted
andrew_08416 Beverley_01
Posted
I did give it a go and although it took me a whole evening to drink one glass. oddly I did feel a little better after starting that. if only I could put up with the headaches the next day.
Seriously I'm a light weight (cheep date) these days :-)
x
Beverley_01 andrew_08416
Posted
It's strange, maybe its if i'm already symptomatic it helps? Last year I visited a friend in Shrewsbury ( travel for me is a nightmare with this) I got back and was shakey, in pain with mind fog and slurring (before the drink) truth be known, I felt abit miserable because of it too. I d agreed to meet another friend who lives on route and we went to the pub. 2 pints later I felt "normal" and we carried on. The next day and the there and the next-nightmare!
Beverley
andrew_08416 Beverley_01
Posted
I've not ventured out on an event since this happend, but I think this will be good for me as I've not seen my sister in some time.
With me the wine felt like it helped reduce the pain too. but cant stand the feeling the next day even after just one glass.
Beverley_01 andrew_08416
Posted
Remember, you're still you x
andrew_08416 Beverley_01
Posted
xXx
Beverley_01 andrew_08416
Posted
andrew_08416 Beverley_01
Posted
I've got it all worked out :-) and I'll tell her when she is back from her honeymoon and all settled. Think its for the best.
x
Beverley_01 andrew_08416
Posted
Best wishes
Beverley
andrew_08416 Beverley_01
Posted
I do drive and that was another plan. However as I needed to obtain some family medical history I also needed to let the cat out of the bag yesterday. My sister now knows that I have an issue. Cant tell you the relieve even though she took some calming down, lol.
I did however establish that RA runs in the family but not Lupus, as well as another bone issue. so it was at least fruitful in that regard.
My GP is still betting on Lupus, my opinion has shifted more towards RA but I still cannot explain the face rash if its not Lupus.
Waiting for the Rhuematologist is killing me. I've asked my GP to refer me elsewhere as its taking too long.
but at least the issues have settled down somewhat. if only the fatigue and joint pain would clear up then I can get on with my life. I can deal with the muscle aches and feeling a little sick, but need energy to do it.
Catch 22, I think.
You dont appreciate how much you rely on your joints, (for me hands and knees) until something goes wrong. Opening a jar, writting out an email, holding a pen, walking up the stairs, sitting at a desk all hurt.
To me I still believe there is a medication which will reduce the pain and help me to become more mobile again. All the professionals need to do is diagnose the issue and patch me up.
Sounds Simple doesnt it. :-)
xXx
Beverley_01 andrew_08416
Posted
Sounds a relief telling your sister : ) am wondering, do you think you have RA and cfs/me combined? Were you ruled out of having fibromyalgia? I guess my path here was easier in that my symptoms started straight after crash so I know I can't have developed a deficiency or got a virus. Still, I 've the fatigue, mind fog, pain and other random stuff. My Answer is i have no real answer but, my question has had to change. How do I adapt and ultimately hope overcome this.
You are so pro active in your search and I feel this Is no doubt part of your personality from before all this. Keeping sight of who we are I feel is imperative. Not who we were but, that core thread that still runs through.
I hope yr appointment Is soon? Keep asking questions and hopefully you'll get to the bottom of all this quickly. Reading that back, it seems a bit disjointed but, hope you get what I mean.
Wishing you a good weekend.
Beverley
andrew_08416 Beverley_01
Posted
Dont worry I get what you mean, :-)
Your right about me being proactive, both before and after getting sick. When the chemo finished and I was left with the fatigue and chemo brain fog, I researched diets, supplements and protens to treat the conditions. Some success with Electrolytes and magnisum but overall my diet took a huge overhall. including oily fish, sweet potatos, Turmac and a serious amount of greens. Anything I could do, I was doing....
When I look back at that period. between chemo completion and the big flare there were some really good days where I was my former multi taksing get stuff done type of self. Life was extremely positive, I was looking to open a second business, take up more hobbies and then this happened.
What energy I do have now, I spend looking for a biological/medical loop hole that will allow me to escape whatever this is.
After picking up some family history I am also wondering if its a combination of elements that is going on, which is confusing the situation.
Focusing on what they can prove.
raised LDH - Inflamation.
Face rash - visible and looks identical to a Malar/butterfly rash associated with Lupus.
CT scan - showing organ related issues (Lungs)
what I tell them.
Joint pain in both hands and knees. which effects mobility now.
extreme fatigue.
muscle aches (previously scorching pain)
mild brain fog.
abdominal pain (intermittant for more than a year)
obviosuly mention the face rash.
I think I am over the worst of the flare up, which also included the need to rest half way through the day for anything like 3-4 hours. I still need to rest and take it easy between jobs and I can still only manage half days in the office.
Im suspecting RA because there is a family history of it. what I cannot explain is the face rash and the negative test for Lupus.
Right now my life's kind of on hold not knowing what this is and how they can treat it, if they can treat it. I know if it is RA then it can be treated and I can get the mobility back in my hands then I will be one extremely happy chappy and able to forge a new career for myself.
I think that is the other driver right now is to get an answer so that I can plan accordingly.
my next appointment is next Thursday to discuss the CT Scans, and the problem they found with my Lungs. Which could also be related to Lupus. or another type of Auto immune issue. until then I really dont know what to make of all this.
Im still waiting for that pesky Rheumatologist appointment to come through and I will call then later today to get an answer. Its been over a month since I was assigned one and no mention of an appointment as yet.
Have a great weekend also my dear
xXx
Beverley_01 andrew_08416
Posted
What a journey you've been on already and can totally get that the sooner you know what It is the quicker you can plan your next step. Sounds like things have settled a little and wonder if the vits have helped.
My issue with my hands Is I feel like like i'm wearing oven gloves and cant chop ,peel veg etc and constantly drop things. On good days-my hands re hands but don't have energy lol!
We'll get there ; )
Thankyou, I plan to do as little as possible at the weekend : D
andrew_08416 Beverley_01
Posted
It drives me crazy, but I did go and speak with the pharmacy again this afternoon they said that with the GP not giving me anything that its common practise until they know what it is. Grrrrr. I did ask if they can help or suggest anything which could help the hands. They suggested arthritic gloves. but sadly they dont sell them.
I needed to get to the pet shop this afternoon and on my way over I remembered there was a mobility shop just over the road. They had them £25 ouch - but I tell you what .... Worth it. :-)
They are thermal gloves which I think its the heat that helps. I've not worn them all the time just pop them on for an hour or so and then off again until the pain returns.
Im gobsmacked something so simple has helped so much.
Although I still noticed pain when trying to cut up my dinner with or without the gloves. Guess you cant have it all. But hay its a little past 10pm on a friday night and I can use my hands without too much pain for a change.
If you can give em a go .
regards
Andy x
Beverley_01 andrew_08416
Posted
Fantastic re the gloves! sound a huge help. I'd never heard of them until you just mentioned them. Anything that helps is great. Like you say , maybe it is the heat that helps.
I'm being good and not doing very much after, I guess over doing things a bit recently. Went to Manchester, not far from here really, on Friday but, so busy we hardly went to any shops before having a meal and returning home. Glad the girls weren't too bothered about the shops either. We still have vouchers from Christmas to use up : ) so, have to try another time. I've had alot of pain this last few days and possibly should have reconsidered the trip out. Still, it was good having time together. You mention pet shop-What pets do you have? Have 2 guinea pigs here. Funny little things they are!
Also, did you say its 50 miles to your sister's wedding? How are you with driving that far? I think I'd have to get there the day beforehand and stay over. its my birthday in a couple of weeks and I'm determined to get away. Travel is an issue, I tend to get the train mostly, seems to really tire me out now though so I lay down on the train if I feel really bad : )
Unsure where you are In the country but its been extremely windy here the last couple of days so its been no problem staying in doing nothing : D hope your weekends gone well.
Beverley
andrew_08416 Beverley_01
Posted
Its definately the heat which helps. yesterday I tried an experiement - didnt wear the gloves - did a normal day - but when they started to ache I submerged my hands into hot water for 10-15 mins. basically the same effect. and eased the pain. Could have saved myself £25 there but gloves are probably more practical.
What has also definately helped was knocking the daily light excersises on the head. Its been about 2 weeks and the muscles are hurting less already.
Yeah I'm going to attempt to drive. I've an easy car with light peddles, cruise control and massaging/heat seats. Most of the way is duel carriage so I shouldnt need a great deal of foot work. My wife also drives although never driven my car before. I'll take pain killers before and after when I leave to get back. Also I've a test run this week to the oncologists who are just under 20 miles away its a late in the day appointment so I'm going to get hit with traffic at kiddy kick out time, and work leavers as well as traffic around the airport. Think the journey time will be about the same. expecting at least an hours delay
I would take the train but where my Sister lives the last train leaves at 8:30pm - best take the car.
Im in the south of England.
Yeah its been very windy down here too, cold and raining. But there is plenty to keep going on with. I try to do all my little jobs in the mornings and slow down in the afternoons/evenings which has helped to find a balance. Is that the same for you?
regards Andy
xXx
andrew_08416
Posted
Last night my GP called me from out of the blue. he wanted to know when my oncology follow was and then said that he is sure there's nothing to worry about, that he went over the notes. I reminded him that it was the same Radiologist who looked after me through cancer diagnostics and into remission and that she never ever resonded the way she did on the CT scan, when she also said I've a problem with my lungs.
but at the end of the day if it was serious then the oncologists would have called me in Immediately. I look back to the night I went to A&E with the lump who sent me on to Hospital with a strong possibility of emergency surgery that night. Cut a long story short they sent me away to come back for a scan suposed to be the next day but they couldnt fit me in due to a majory accident which took priority. I spent the weekend with ice packs and anti inflammatories come Monday morning I refused to go in for my ultra sound. as it looked as the lump was starting to reduce.
In one hour I received over 5 calls - doctors and a surgeon. On the last call they said we found something in your blood tests taken on Friday night. we cannot make you come in - but we urge you to do so.
I went in after that comment and was diganosed with cancer. That is why I dont think its cancer its been over 2 weeks (tomorrow) since the scan. and I see my oncologists this thursday.
My GP also said that I need to call the Rhemy this morning and to try and force an appointment ASAP. and to let me know if I get any resistance.
I also advised him that I am starting to feel a little better- much of the issues have calmed down except the joint pain and fatigue really although still present.
He then said that he still suspects that I've Lupus and then started talking about patients who would test negative on the basic blood tests that the Rhemy will have specalist tests they can order to help rule it out. He wants me to tell them that he believes I am a test negative patient.
Grrrr. I even told him yesterday that my face rash has also calmed down to a light pink and that I've taken a lot of photos. Only for the rash to POP up again this morning how annoying but at least its another photo for the rhemy.
I'll try and get an appointment asap - but it feels like were getting there - bet I still need to wait :-)
x
Beverley_01 andrew_08416
Posted
Sorry for late reply, my yesterday was a bit of a shocker and thus resting today. Sounds like you're covering all bases re the travel and having a second driver available is good. Also at a push, could you stay over anywhere while there? Its just an extra option. Re myself energy wise , I can't say I see a difference much morning or evening most days at present. Sometimes after i 've eaten I can feel more clear headed. I tend to muddle through things that need doing when I can. Its such a lovely sunny day here in contrast to the house shaking winds of the weekend : )
It seems strange the doc ringing you up but maybe just dead keen? No harm in chasing up the rheumatologist, and hopefully seeing them will settle whether it Is lupus or not. Typical the rash popping back up like that : D hope you managed to get app sooner rather than later. Re the oncologist, hope they can explain what the results of scan mean and set your mind to rest.
You sound really lucky with catching the lump on your neck so quickly. I bet that was a bit of a shocker at the time though!
Beverley
andrew_08416 Beverley_01
Posted
it wasnt my neck :-( but not to worry. Bad news on the Rhemy front they are so disorganised and rude that they cannot see me until April or maybe May. I've just done a huge complaint as I didnt expect to be laughed at down the phone.
Im just heading off for the day. but have started to look private. I need to get to the bottom of this now. regardless of feeling much better since October I still have issues that I need to be told will go away or may need medication to get under control. Eitherway I cannot afford another flare up and right now feel a little like a ticking bomb. Not knowing what to do and what I can get away with.
Frustrating times.
Hope you rest up
x
Beverley_01 andrew_08416
Posted
Do you know I really thought I'd read that the lump was in your neck, I can see it doesn't say neck so no idea why my mind put that In : )
That sounds annoying re the receptionist for rheumatology. Did you manage to get appointment anyway? I know you said about going private. My neurology app was given to me in December for April. Seems the waiting lists for some departments is a long way from ideal. Its also very early in the morning so I tried to change it and was told it would be an extra 6 weeks if i did!
I've been resting well and hope to thus have energy to do things i planned tomorrow. I understand your frustration with all this, The ticking time bomb feeling too. I went out on Monday and that threw me. At the moment I really have to rest alot and feel this is all due to the 1st aid day course I did two weeks ago and then travelling and meeting up with friends that weekend. It seems so little but, ends up having a big effect at present. Hard to know what will tip the balance. Like you, I've knocked out the walking temporarily and hope to restart it when I feel less symptomatic. Jeeze, what a ride we're both on!
We'll get there : )
Beverley
andrew_08416 Beverley_01
Posted
I'm still annoyed with the way I was treated yesterday. so have decided to try and get diagnosed privately, I need to get tomorrow out of the way first. If I am able to secure an appointment within a short space of time - I'll be sending a very stern letter to MP Jeremy Hunt.
Cant believe what I've been reading - apprently you can get a private appointment for between £150 - £300 and get seen within 2 weeks. I know for a fact that the rhuemy team that I've been assisgned too cover 5 NHS hospitals and also hold private practise with Bupa. read the reviews on Bupa concerning the same specalists and they are all Glowing people saying they were seen within 2 weeks. OMG!!!
Todays not a good day, its cold im acking more then I have done in weeks.
hope you have a good day
x
Beverley_01 andrew_08416
Posted
That's really frustrating. I feel Its so unfair a system we have. I hope tomorrows appointment goes well and you get some answers.
Yes, it is absolutely freezing here too! I'm not aching as you are but, am shattered after turning up for a meeting that was cancelled and no one let me know. So, wasted journey time and energy.
I hope the aching settles soon. Its so frustrating when things pop back up. I wonder if related to experience yesterday with rude receptionist? Although I know you also mentioned heat helping your hands.
Keep warm
Beverley
andrew_08416 Beverley_01
Posted
Had another call from my gp he shares my anger and we've an action plan which we hope may work. Can't say much right now.
Heard back from lupus UK got lots of information and as it turns out was right about lupus not showing if it goes into remission.
Also found out that any family history of any auto immune disease like RA increases the chance of lupus.
Looked up my knees and pretty much everything I read all mentioned lupus and RA. Joy :-(
Ive got a few questions for tomorrow one of which isn't about the scan but about the LDH inflammation I need them to tell me it's the muscle one.
Already know the lungs and surrounding lymph nodes have an issue.
If I get what I expect tomorrow then it's a firm finger at either RA or Lupus. And a step closer to treatment.
Gp said he'd happily give me steroids but could make diagnosis more difficult or could make it worse with added muscle weakness or decay. Decided to hold off on that
Roll on tomorrow. The problem is staring me in the face I know it.
Shame about your meeting today hope you get an explanation
X
Beverley_01 andrew_08416
Posted
I'm up late and on a school night : ) you can always private message me on here about yours and doctors action plan if you think It may get moderated?
I sincerely hope you get answers tomorrow/well later today now! Re both the lung scan and the inflammation.
Re the meeting, it was rescheduled. They're having building work, which I knew about and somehow this meant the boardroom couldn't be used even though I managed to get to it without any issue. The coordinator who organized me being there works part time and wasn't in till 2 today so the email that went to them, never got to me. If I wasn't "ill" it wouldn't bother me but, today i could have done with the rest and without that darn journey! When you have an invisible condition I don't feel people believe how hard it makes things.
Best wishes for later
Beverley