Well I have been given some new meds by my gp but no pain relief as of yet!! So far have tried just ibuprofen and paracetamol (did not work as took them for pretty much all my teenage years for backpain!), naproxen (made me feel very sick), diclofenac (had no effect on my pain), amitriptyline (helped me sleep but did nothiny for pain and made me soooo dfowsy in the mornings) and then dosupelin (initionally helped with sleep but is hit and miss now, also did nothing for pain). Now gp has prescribed methocarbamol (muscle relaxant) and co-drydamol (pain killer) after I had a panic attack which gp believes was triggered by immense pain I was suffering. I also am to continue the dosupelin.
I have been taking the new meds 2 days now and don't feel any different. I am still having a lot of muscle pain, with tender achy muscles. Also lots of twitching and jerking still. The pains in my hands, feet and ankles are just so bad! Walking hurts, typing this hurts, even holding cutlery hurts to hold so feeding myself is now also painful!
I just seem to be getting worse as time goes on and I feel so let down by the medical profession. I used to doubt myself and think it must be all in my head but I can't see why anyone would want to imagine such pain!!! My partner is supportive but works long hours so I have the house to look after as well as my 4 year old son and now university. I just feel like giving up. When will the medics start taking me seriously and actually help me??
Sorry for my rant, I am feeling sorry for myself. I shouldn't complain as I know others will be going through worse just I feel like I am fighting a loosing battle xxx
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megs_tom
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I can feel the frustration in your post. And cann fully understand that you feel let down by the medical profession. Is there a pain manegent clinic near you?
For me, my combination of meds, -Hydroxycholoquine, Statin and large dose of Omega 3 + Aspirin, act collectively as an effective way of controlling the pains and cramps which would otherwise be pretty nasty. (- Though I would not compare my situation with yours.)
Each has an anti-inflammatory element though this not the primary function of the thing.
If you can take things like Omacor ( omega 3) it might help without adding to drug list, which has got to be a good thing. Again a 'clean' statin such as Pravastatin shouldnt be toxic or interact with your other painkillers, but will have a good effect on the inflammation.
Also drinking Aloe vera and taking a camomile bath might make you more comfortable.
Thanks for your reply. I am not aware of a pain management clinic near though it is something I could enquire about. I have started taking omega 3 capsules (though find them near impossible to swallow ) so yesterday I bought this flaxseed stuff thats has walnuts and some other nuts in and you can just add it to food. I mixed it in with my porridge this morning and have to say it was very yummy so this may be a better way to get the omega 3 into ( one less tablet to swallow suits me fine!). I am also looking into starting pilates too. I am trying to self-help with natural ways but have had no relief yet (I know it may take awhile) but in the meantime I would just like some tablets that relieve me of even some pain as I am struggling more and more everyday thanks again for your reply. Takr care xxx
You have a good attitude, I stretch and do T'ai Chi foundation exercises to keep loose, I walk the dog to keep in fit, and when things are working I do the tinyest bit of exercise in the form of short pulls on a frame to keep my postural muscles in shape and my back loose.
I am meant to take 4 x 1gram omacor a day, but as you say they are huge and not so easy to swallow.
We are thinking of getting a dog so that will get me out and about. Those capsules really are awful to swallow but then the co-drydamol are like the size of paracetamols and they always get stuck in my throat too, nothing worse then when they get stuck and start dissolving take care xxx
A dog is also the best thing to get you chatting to complete strangers, Which is a good way to not feel isolated.
But you will have to make sure that you have enough warm dry gear to get you through the winter and keep a bar of chocolate or the odd biscuit in your coat pocket- no not for the dog, for when you feel a tad jaded.
Yes this is true. I grew up with dogs and since moving out on my own 6 years ago I have missed having one around! My little boy is always asking for a puppy and my partner and myself would also love one so it is something we have been looking into the chocolate idea is good, often that horrible drained feeling suddenly creeps up on you and wipes you out! Xx
Reading through your blog reminded me of the dreadful pain I experienced almost a year ago. I thought as did the GP that I had flu, my joints shoulders, knees, feet, hands and muscles ached, the tips of my fingers felt as if they had painful discs attached, I could not turn off/on a tap or hold a spoon. Painkillers did nothing. To cut a long story, I was admitted to hospital and eventually diagnosed with Lupus I was then started on prednisolone and within hours the relief I felt was overwhelming I could have shouted from the roof tops I began to think th pain would never go I do not know if you have Lupus or are on steroids. Are you'e inflamation levels raised e.g. CRP/ESR. It must be terribly difficult and frustrating for your family and you and trying to study at the same time suffering such pain and the effects of medication. Will be thinking of you. Take care I do hope you get some relief soon.
Thanks for your reply. At present I have no diagnosis. I had my bloods repeated at thr end of august and was told off rhuemie a week before that that he would see me in 6-8 weeks to discuss the results but when I rang his secretary to see when my appointment would be I was told the earliest one was January! She said she would forward my results to gp but when I saw gp on friday he had not recieved them yet so I am still none the wiser as to when I will get the results. It is very frustrating. It is easy for them to fob us off but they don't think about us having to live through this every day! Thanks again and take care xxx
Hey I feel for you so much it is awful when you don't feel the docs understand. My rheumie was so good he prescribed me tramacet which for me works lovely puts me on a high to start and also helps relax me if cannot sleep. Takes my pains off as well. This rheumi now left which I was gutted about as he so good. I am seeing my new one this week so will see. Why don't you ask to be referred to lupus unit at st Thomas hospital as they know what they doing there! Take care xx
Thanks for your reply. Glad you have had a good experience with rhuemie and hope that continues with new one!! It is so hit and miss. I live in Sunderland so St.Thomas is not an option (I am right in thinking that is in London?) Thanks again. Take care xxx
Yes you can be referred, I live in North Oxfordshire and make a monthly pilgrimage to Guys Hospital as they are the only people who appear to know what they're doing! I just asked my GP to refer me and 2 months later off I went.......it's been life changing, they've updated my meds combo (which they reckoned was 10yrs out of date!) and actually listen to me & take me seriously.....if you have the ability to get down to London I would recommend wholeheartedly
Thanks for your reply. I could alway get the train down there. Would they do blood tests etc like my rhuemie does? I am willing to travel if it means I might get some answers, though I don't know how willing my rhuemie would be to refer me as I don't feel he even believes me! xxx
That's what I do.....train & tube which is fab as there's not a lot of walking involved, Guy's is next door to London Bridge station. Yes every month they do full set of blood tests and I also have mobile & email contact details for my Clinical Nurse Specialist who rings me with results, in case I have issues between appointments. I basically manage my care with their help and they tell my GP what's happening. I no longer attend clinics at my local hospital as they're not specialists in either Lupus or Hughes and it really has changed my life. I nearly died back in 2006 when I was throwing clots and knew myself that it was my Lupus but local hospital wouldn't believe me until my liver & kidneys packed up.
Can you by-pass rheumie and ask GP to refer you? (Refer GP to The Patients Charter and Patient Choice......we have the right to both a second opinion AND a choice of who treats us)
Would I be able to ask for afternoon appointments? As it would take nearly 4 hours on the train and I wouldn't be able to afford to stay overnight. I just really want some answers and to speak to someone who specialises in this area!! My rhuemie is prettyuseless, I personally don't think he has even ran all of the blood tests that he could of! Thanks again for your reply, this has really gave me some hope! Xxx
Absolutely, they should send you an initial appointment, don't worry about the time, just ring the appointments team who will be very helpful, explain your situation and they should be able to make you later appointments. I am absolutely awful in the mornings so all my appointments are for 3-4pm to allow for this, so you're not alone!!! If you have energy for nothing else......GET THIS APPOINTMENT, I wish you all the very best, as do all of us lupies and keep in touch xxxx
hi welshexile , i asked my gp to change my rhuemy as he doesnt listen all he ever asks about is my weight so i refused to be weighted before seeing him and he said have u been watching the paralympics at all ,amazing people , made me feel very small and selfish for even complaining about my pain
That is disgusting, how rude!! When I first saw my rhuemie he said I could do with losing some weight and that would help my joints! I was quite offended but then I went ahead and I lost a stone and I feel no better, infact I have gotten worse!! Is it your gp who won't refer you on or your rhuemie? If you mean rhuemie then speak to gp, if you mean gp then speak to a different gp. Remind then of the patients charter where you have the right to a second opinion. I asked my gp a couple of weeks ago and got my letter on wednesday with appointmment for new rhuemie good luck and keep fighting for yourself cos no one else will xxxxx
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take care xxx
the chocolate idea is good, often that horrible drained feeling suddenly creeps up on you and wipes you out! Xx
Hi there, I'm new here and confused 🙄
Lost Weight & Feel Worse 
Feel very demoralised
pain in the tops of my feet and stiff hands. 
in pain and so fatigued. pain killers useless.
