New man on the forum
Posted , 6 users are following.
Hello all
Just thought I would introduce myself, I’m Richard aged 38 married with 3 kids and seem to be one of the few men on this forum, but I have yet to be diagnosed with Fibro or M.E.
It started in June this year after a RTA, I went to the docs after the terrible pains in my limbs wouldn’t go, feeling tired and achy, depressed. The doc ran loads of blood tests and I was diagnosed with Underactive thyroid and high cholesterol.
I was a bit shocked at this because I’d never had anything wrong with me before, but I looked it up and thought, oh well sounds like the pills will sort me out and I’ll go back to living a normal life. But I don’t seem to be getting any better, in fact I would say I’m now worse.
I’m currently on all sorts of meds which include the usual, Levothyroxine, Tramadol, Amitriptyline and Simvastatin for my cholesterol. It’s a wonder I don’t rattle when I walk! (That’s when I can walk).
My doctor now seems to think I have Fibromyalgia or M.E, but like many on this site I’m having to go through all the tests, which seems to take time. The docs been really good and does seem to have some knowledge and understanding of this condition, after all I’d never even heard of it until he said that he suspected that’s what was wrong with me.
Looking back before the RTA, I had been under a great deal of stress with work and personal life but being wrapped up in it all, I think the adrenalin must have kept me going. I can now see that I already had some of the symptoms, feeling low, tiredness all the time, lethargic, loss of memory, emotional (I hate to admit this but I could cry at the most stupid things)
I just feel rubbish all the time, my legs and arms are the worse, aching constantly and I’m unable to sleep properly due to the pain being so severe that I can’t get comfortable. I can’t walk for more than 20 metres without having to stop and rest.
To date I am now waiting for an appointment to see a rheumatologist after being discharged from Physiotherapy and seeing at Orthopaedic surgeon who both said that I needed to see a rheumatologist and that they suspect Fybro.
I can’t believe how my life has been turned upside down in such a short period of time, 12 months ago and had lots going for me and was really active with walking my 2 dogs and running a paranormal group had a great job and family life, now all my spare time is sat feeling sorry for myself in pain and tired.
Work has been really good with me and understand that I can’t get up sometimes in the morning so have allowed me to work flexi time to fit in when I feel well and have made loads of adjustments for me so I can carry on working.
My poor wife has been great and understands that I feel rubbish and knows when I’m having a really bad day. However the worse thing is that I feel such a fraud sometimes. I seem to have bad days, then I have what I call wave days, these are days when I’m up and down. One minute I feel fine and think thank god I’m cured, (you know like just after a cold) but then the next minute I’m in great pain again.
I seem to suffer from the pain in my legs constantly which effects my walking, but I feel worse when it’s in my arms too, I can’t even hold the phone to my head on my bad days, all I want to do is just lay down. I then get depressed which seems to make it worse, so I end up going to bed and writing the day off as a bad one.
Anyhow, I’ll sign off for now has I seemed to have gone on a bit, just glad to know that there are people who understand how I feel.
Richard
0 likes, 113 replies
Lizy
Posted
That sounds like an excellent idea just doing nothing.
I'm not so sure about this pacing yourself thing even when I do less I can still feel really rotten the next day. I think theres more to it maybe I will keep a dairy and see if theres any pattern to it.
Has anybody else tried this. ? I wonder does it have anything to do with allergies? I have plenty.!!!
Take care all.
Lizzy
paddy
Posted
Just googled \"pacing\" and found a link to the action for ME website. Seems like a fair bit of info there if you`re interested :!: Not sure if I`m allowed to send you the link so if it doesn`t work I`ll send it in a private message. www.afme.org.uk/treatments.asp?id=7
Linda
Lizy
Posted
Thanks I have saved the pacing file and will read later, have had a quick look and some very interesting things are quite clear to me just at a glance. Firstly I had an occupational therapist appt and she said to me that she couldn't help me, she quite clearly was not very well informed about pacing, does rheumatology not have this info it must be pretty much the same as ME. Also I was refused any kind of counselling I have asked twice for CBT and once for straight forward counselling and refused on each occasion.I have had no pain management advice and have no medication for pain apart from paracetamol. It would seem you need all this to help you cope and learn to pace.
Is it how much fuss you make as to how much help you get or does it come down to cost? Surely it would be so much cheaper for the health service to teach us these things rather than been at the docs all the time.I know that if I had the full understanding of what I should be doing I would be able to alter my life style. I do have a brain and I'm sure you have too.
Richard I think you might find the pacing booklet useful too.
Have a good evening.
Lizzy
richard1971
Posted
Thanks for the leaflet, I will read it later.
Lizzy, sorry to hear that you're having problems with your husbands job. Take my advice and make sure you get a solicitor who deals with employment, don't rely on unions or anything, they really let me down last year when I needed them. Luckily I was just demoted and kept my wage. (Still don't know what for) but I'd never mess about with unions again, complete waste of space in my opinion.
Hope everyone else is ok.
take care
Richard
Lizy
Posted
I hope all goes well at your appointment tomorrow.
Everyone take care.
Lizzy
richard1971
Posted
Just to let you know I've just got back from my appointment with the rhumi. It went really well, she diagnosed me with Fybro straight away, but she thinks there maybe something else that's contributing to it, so I've got to go for an MRI scan, tooks some more bloods and xrays. Said I need to go back in 6 weeks.
I'm releived more than anything that she believed me, going from what some people have experienced. At least now I have a name for what is wrong with me.
Just going back to GP to see if I can start hydrotherapy now to releive the pain.
Speak to you all soon.
Richard
paddy
Posted
Glad your app went well, I know what you mean about getting a diagnosis, it does seem to make you feel better about things. Hope you get your hydrotherapy sorted out, GP`s seem to have different ideas and things that are available to us. I was given physio and a 6 week exercise programme at a local gym. Went quite well, but because of my big problem with chronic fatigue and my other family commitments I`ve never been able to find the time or energy to keep going :!:
Begining to get things sorted out for Mum but need to make the trip twice again next week
It`s not that I mind going but it takes anything up to 48hrs for me to recover from the drive and then I end up behind with everything again. Still haven`t caught up from the fortnight when I went 4 times a week. Talk about 3 steps forward and 2 back :!:
Take care all
Linda
Lizy
Posted
Richard I'm glad things are progressing for you. I was offered Hydrotherapy but ended up cancelling it as it was half an hour twice a week for 4 weeks and i just couldn't face the half hour drive each way and the queing for the hospital carpark which at times could be up to 40 mins wait. Mentally and physically I couldn't cope with just the thought of it.
Today I feel really dreadful, I have spent most of the day sleeping, my head is agony. What I would give to have a couple of weeks with no symptoms at all.
Linda I hope all goes well with your mum next week. That the driving doesn't make you too ill. Linda have you got anything nice planned?
Tess hope you are having a good time at Lands End? Looking forward to hearing all about it.
Di I hope all is well with you.
Do you think if we had some hypnosis which told us we are well we would feel better.!!!!!!!
Take care
Lizzy
paddy
Posted
I like the idea of hypnotherapy, Lizzy, just imagine waking up and feeling normal. Wow :!: Sorry you`re not so good today, I get migraine, which are ten times worse since i had fibro, so know what you mean
Yes I do have something nice planned, not very often I manage it, but I`m going to the Knitting & Stitching Show at Alexandra Palace with my daughter, in two weeks
It`s only about an hour or so drive from us and she will do the driving so that`s an added bonus :!: Don`t usually plan things in advance cause something usually goes wrong :!:
Well hope you`re feeling better now and hope everyone else is ok
Linda
Squires
Posted
Got back about an hour ago. We have travelled 362 miles today. Started at quarter to ten this morning. Had three rests stops. But was very lucky no real hold ups.
Will catch up with you all again tomorrow as going to have a cup of tea now.
Tess
Squires
Posted
Linda will have a look at that web page about pacing yourself. :lol: I do hope things get sorted out with your mum soon so you have less driving backwards and forwards to Peterborough. :lol: Try not to get too stressed about catching up with your jobs to do. Set yourself a limit each day and stick to it and at least you will see what you have ahieved. :lol: I know its not easy and I should take my own advice as well. :cry: Linda I hope you have a lovely day out in a couple of weeks when you go to Alexandria Palace. You deserve a day out.
Lizzy how is your husband's job situation now? I hope it can be resolved for him. :lol: Lizzy I think it is a good idea to keep a pain diary also how your are feeling that day. I have done that since I was told I had fibro and finds it helps me. I do look back at what I have written but have never really noticed a pattern as such. I think a lot of it depends on how stressed you are on a particular day. The only thing that does come up for me and probably the same for all of us is the damp weather makes my pains worse. :cry: You should also ask your doctor about some more pain relief. Paracetomol isn't enough for fibro. I have co-proxomol that I can take. Do you take ampytripline as well? I do think you are right if you don't make a fuss you are not offered alternative treatments. :cry:
My daughter always says if you want something ask the doctor for it. :lol:
Richard good to hear that you have finally been told it is fibro. It does make you feel better but doesn't alter the fact you still have to deal with the illness. Like Linda I was offered physio and did find it helped me. I came away with some exercises I could do comfortably at home. Doing these first thing in the morning does help with my pain. I hope they finally find out what else is going on for you and your mri scan goes ok.
Di I hope you are doing ok and if you have gone away for your break you are having a good time.
Well we had a lovely time! One day rain and the rest sunny and cloudy.
Managed to have a walk around lands end and took some photos. Had a interesting time away. Did lots of walks and have now come back for a rest of sorts. Although got lots of washing and ironing to do. Today is Sophies birthday and she is one so going to see her later. We did go to St Michaels Mount and had to go over in a small boat as the tide was in. When the tide is out you can walk over along a cobbled causeway.
Well got to go sort more washing.
Tess
Lizy
Posted
Hope everyone has a good day today.
My appt. went really well. I do have Lupus and also Sjogren's Syndrome and high blood pressure and he also thinks my thyroid is yoyoing between overactive and normal. We didn't touch on the fibro as we ran out of time but I'm sure if he felt it was fibro he would have said So now he is writting a letter to my Gp. He thinks it would be a good idea to restart Lupus meds and have radioiodine to sort the thyroid as its so much easier to controll with thyroxine.
Alan is quite upset his hearing is tomorrow in London.
Wishing everybody a good day.
Lizzy
Squires
Posted
Its good your appointment went well. At least you know what you are dealing with now. What is Sjogren's Syndrome. So looks like you haven't got Fibro. Do stay on the site though and talk to us all as a lot of the symptoms of Lupus is very similar to Fibro. :cry: Did they stop your lupus meds? I have had the radioiodene before but at a much higher dose to kill of any cancer cells. My sister in law had trouble with her thyroid and had what you will be having and has been ok since. I think she still takes some thyroxine though.
I hope it all goes well for Alan tomorrow and be thinking about you all.
Hope everyone else is ok today!
Tess
paddy
Posted
Glad you had a good holiday Tess, back down to earth now with all that washing, hey :!:
Glad you got some answers Lizzy, like Tess says still come on and chat, we shall miss you if not :!: Hope everything goes well for Alan today, it must be so stressful for you both.
Well, not sure if I should say this, but hope things are sorting themselves out as far as Mum is concerned. Her carer started this morning, and I drove over just so as I could hear what they were doing etc., cause if they told Mum she would never remember :!: They are doing a short visit night and morning to give medication and check all is well, and twice a week they are going to help her bath. They seemed very good and have at least given me some peace of mind. So am planning, (hopefully) to go over each Tuesday to take her to the bank, as this is the only thing left now that she would have to do alone, and with two visits having ending in her getting lost, I feel it will be worth the effort
Also things are moving on with regard to our adaptaions
Am waiting on a call this afternoon to give us a date for the lift to be installed, so watch this space!
Well hope everyone else is ok
Linda
Squires
Posted
That is good news about your mum! Thats what we had to do for Stewart's mum and have a carer in morning and evening to help with medication etc. Hope it all works out for you.
Good news to about your alterations! Things hopefully now will sort themselves out a bit and take some of the pressure off you. :lol:
Hope you are ok Lizzy after Alan's meeting today.
Tess