Recently diagnosed with CFS - any advice?
Posted , 7 users are following.
I've been recently diagnosed with CFS and am new to this forum. Just wondered if any of you have advice on any of the following;
1. Pain management - I have days where pain is unbearable in my legs and hips and am taking co-codamol daily which has little to no effect.
2. Maintaining a routine - I am really struggling to keep to a routine. This is really early days for me but just trying to get up at the same time every day is difficult.
3. Returning to work - I have been signed off by doctors for 6 weeks and am due back in the next few weeks (full time) and am really worried that I will fall at the first hurdle. have you found it is better to wait until completely over this illness to return?
I am currently waiting for an assesment for therapy which may help me cope with different aspects of this illness, however, in the meatime I would be really greatful for any advice.
Kristy
2 likes, 19 replies
linda83143l Kristy21
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x
Kristy21 linda83143l
Posted
My workplace unfortunately operate on full time or no time... I am yet to find out if they will accept my doctors advice for gradual return in the hope I can keep my job!
Are you in full time employment? Did you need time off work, if so how did you go about returning?
X
Gemc Kristy21
Posted
Don't put pressure on yourself to get back to work, the stress will be counter productive, but having a goal is good. I found having an honest and open discussion with my boss helpful and took loads of information in for them to read and understand what it is I was dealing with. From there you can discuss the possibilities of a fazed return and look at your work load. but only go back when your ready.
The pain is torturous, as is the routine, all I can suggest is focusing on one thing at a time and don't expect too much from yourself, if it's too much going to bed and getting up at the same time, start with just focusing on one and work from there.
Sorry if this isn't much help, if only there was a magic cure
take care
gem x
Kristy21 Gemc
Posted
Sorry for my delayed response, have had a rough couple of weeks and havent been online.
Thank you for your advice, I have now been and had a meeting @ work and they seem to be fairly understanding - they took copies of all doctors & consultant letters which helped prove my case!
I have now relaxed a bit with my routine and I have found that has helped and often I am able to do the same things at around the same time each day. Doctors are playing around with my medication for the pain, however, still no improvement
Kristy x
jimmy_48419 Kristy21
Posted
Hopefully your employers understand your illess - alot of companies don't. Fortunately mine have been ace. Although some management find it hard to understand my ME illness they allowed me to work just the mornings after my last relaspe. I've since built up to full time hours again and they allow me to come into the office early (as I wake early because of ME) and leave early in the afternoon.
If you can get through to them how difficult this illness is then thats half the battle. Employers have a duty to to flexable in these situations but sadly some are not.
Good luck with your recovery
Kristy21 jimmy_48419
Posted
Thank you for your response, sorry for my delay in replying i've not been all that wonderful in the last few weeks. I seem to have got across to my company now regarding the illness which like you say is half the battle. Thanks for the advice, I hope to be back part time/full time in the near future.
Kristy
jackie00198 Kristy21
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Kristy21 jackie00198
Posted
Thank you for the response and for the advice, I think that you're definitely right in that going back too early could cause longer term issues! I am still awaiting my therapy & have been out of work since early Oct. Hopefully once I learn to deal better with the illness and my pain is under control I'll be ready to return.
Kristy
alison44235 Kristy21
Posted
I don't get a lot of pain but if i do I just have to sit it out and it will go eventually.
As for a routine. I rest everyafternoon if possible and go to bed really early. Yet again if it is possible. If on holiday I cannot so either so takes me a week at least to get over it this time it has taken 2 weeks.
I have had M.E. for more than 30 years and for the past 2 it has been really bad and have not had one goodish day. i am finding it very hard to live with at the moment. But keep struggling on as you have to.
I don't think I could work so good on you trying to get back to it. I do work occasionally I travel around the country to give talks and workshops , but they are a killer so exhausting takes me days too get over. Got one coming up next Tuesday.
What kind of therapy are you going to be assed for? it would be intersting to know.
Keep your chin up, you will find a way through. I hope your family and friends understand, most of mine don,t.
Alison
Kristy21 alison44235
Posted
I had no idea that CFS & ME are different, I was under the impression they were the same but known differently! I will have to do more research!
Thank you for the advice regarding routine I have slightly relaxed with mine now but I do find when I dont rest - like you, I suffer for several days afterwards.
I cannot imagine suffering with something as awful for almost 30 years, it must be awful not seeing a way out. I am only 21 and have emotional days where I loathe the illness that is causing my life to temporarily stop. My consultant did say to me that keeping positive is one of the most important things!
In regards to therapy, I am being assessed for CBT (cognitive behavioural therapy) and GET (graded exercise therapy) it is worth looking into as it is available on NHS.
Sorry to hear that your family & friends struggle to understand the illness, for some people it is difficult to understand and they just seem to think you can simply "snap out of it". Fortunately the majority of my family is supportive!
Kristy x
dragontest Kristy21
Posted
Hi Kirsty
I take Tramadol at present and it’s better for me than co-codamol as it’s a slow release pain killer. (Over a 12 hour period) I suffer with ME and only by chance did the Doctor prescribe it to me for arthritis in some major joints... However, the knock on effect is I am able to cope better with the ME.
Tramadol doesn’t suit everybody but it might be worth talking to your doctor about it as a low dose may help you?
Kristy21 dragontest
Posted
Thank you for your advice, I am currently trialling different medications which may reduce the pain I suffer, however, if these don't show any difference in the next week - 10 days my doctor has already discussed with me trailling Tramadol for the arthralgia.
Did you find that the pain was drastically reduced when you started Tramadol?
Kristy
dragontest Kristy21
Posted
Basically Yes, I have only been on tramadol for a couple of months, but it appears puts the pain and discomfort under some control, that then allows me to stay in work and do a bit more outside of work. However, you still need to limit your actives each day as I recently discovered with a good old relapse after doing far too much one day. I think you can have 50mg to 600mg per day, I only take 50mg to 100mg most days and leave the higher dosage for when its needed... it can have side effects that decreases your alertness and with ME you dont need that!
Kristy21 dragontest
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Thank you for the advice! Kristy x
dragontest Kristy21
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just a quick heads up
I would watch your intake of citalopram it has the tendency to make people tired, sleepy and forgetful etc. its normally given for depression which is sometimes the first way they try to treat CFS / ME.
Kristy21 dragontest
Posted