OMG REALY IM FED UP

[Naz2005]

Went to see rehumo consultant they have increased my steriods to 25mg & put me on calcium tablets but i also disscussed it said something on my previous discharge note about fibromyalgia which i originally thought i had because i mentioned my symptoms to my GP who said its all in my head so i came home & cried even more because GP was realy harsh the consultant at the hospital confirmed that i do have it but they focusing more on my LUPUS (sle) the pain i have is so unbearable cant even touch it its like cutting it with a sharp object cant wear shoes my toes hurt my feet dunno how to describe the pain & when its at its worst just want to end it all ........ suffered to long & still suffering keep forgetting things 😥😥😥

[samlewis67]

Hi naz I know exactly how you feel , I don't think anyone unless they have a long term condition understand . I'm swollen like a balloon everyday and the pain in my joints is like needles , you need to keep talking it's one of the most important things to do .you will get there and the one thing also I found is write everything down before doctors or hospital appointment s . Maybe you have a support group in your area. Sending you all the best xxxx

[Naz2005 in reply to samlewis67]

Thank you xxx

[Kerrclan]

Hi Naz2005,

Sorry you’re feeling so much pain.

I hope your GP at least prescribed some basic regular pain relief medications to try to get on top of this pain with a plan to review you if it doesn’t settle.

GPs can be very dismissive of pain especially when it can be so widespread. They can’t wait to send you away with another prescription & no other options of management.

I also find my flare ups make me tearful so have the added bonus that they think I’m having a breakdown , depressive symptoms or just simply not coping with my diagnosis! They can also mistake my malar rash for stress!

I have through trial & error learned to self manage my pain. I take regular pain relief adjusting the dose depending on the severity. I have a great pharmacist at my practice who is happy to prescribe pain relief and adjust doses if needed. This avoids an unnecessary appointment with a GP who may not be aware of your case.

I have a daily routine of taking steroids & pain relief as soon as I wake up, sitting in shower for ten minutes on a seat which really helps my muscles. By the time I am dressed the meds have already begun to take effect.

I also have issues finding suitable footwear as even shoes can make pain worse. I wear memory foam slip on sketchers in a half size bigger for the days my feet swell. I also use lavender foot cream daily. It helps slide my socks on & feels soothing. I also keep my feet warm as cold makes it worse.

I also wear high factor suncream everyday even in winter as low lying sun is just as harmful in winter as summer exposure. Forgetting this simple task may cause unnecessary flaring.

When I have severe pain I also let my family know that I need help with tasks that particular day & I rest. Walking can be so painful you can only rest to get relief. My daughter does a great tickly foot rub which helps divert my attention from pain to laughter even for a minute.

It is easy to forget the basic self care we should be doing every day to prevent symptoms. I do the same routine every day & it does help somewhat. Some days the pain doesn’t go & those are the days to rest up avoiding additional pain from walking. Elevating feet on several pillows may help.

I also have an electric heat pad which is my must have. I place it on whatever part of me is sore. Putting feet in a warm foot spa can help too or just a basin of soapy water helps relieve stiffness & pain.

Don’t forget to manage your feelings. Tell someone how you feel & get support with daily tasks which can reduce your workload untilthe pain settles. And It will settle. I distract my attention to puzzles, box sets & sewing. A also tried a few simple mindfulness exercises which help me to relax.

I’m four years diagnosed and still experience long episodes of severe pain and swellings regularly. I can still be too hard on myself by expecting too much. What you describe is how many of us feel you just need to work out what helps for you.

Lupus UK have good information on brain fog which may help you understand the forgetfulness.

I have found this forum & Lupus UK web support the greatest help to me. In the beginning I just read posts & educated myself on Lupus UK. Now I hope I can offer some ideas to maybe help others a little.

wishing you well take care

Kerrclan

[Naz2005 in reply to Kerrclan]

Thank you for your kind support i play ludo online trying to divert my attention but something its impossible all advice taken on board xxx

[Melbourne-Girl]

Naz2005, it distresses me when either G.P.’s or Specialists don’t know what is wrong with you they try & throw the ball back in your court. In some cases they write “Functional” in your history intimating that “its all in your head” This problem can happen fairly frequently unfortunately & if there is not a lot of GP’s to choose from we say that particular G.P. Or Specialist is “Functional” tongue in cheek is course.

This type of Dr not only seems to have any real understanding of your problems he or she does not seem to appreciate the amount of stress it places on their patient which invariably makes their symptoms worse.

As already mentioned it is your right to see a Specialist who may have the knowledge & tenacity to help you with the right bloods, radiology testing etc and then be able to treat you. You need to have a Dr you trust and that you can rely on otherwise things can be so much worse for you. The problem lies with this type of Dr, it is so much better if your Dr may say “I don’t know a lot about this but will do everything in my power to give you the right tests and treatment & refer you to a Specialist”.

Unfortunately each Specialist has so many diseases to treat they usually become experts in only a few diseases. If that is the case you then have to keep going until you find one that knows what you are talking about & understands. There is no way you will ever trust the particular G.P. You went to.

You may be able to find the right type of Specialist by asking people on this forum (they are very helpful in passing on information and sharing). Unfortunately I cannot give you any names because I live in Australia.

Another way to find the right Specialist if you are finding it difficult to find your “disease champion” is to go on the internet and ask which Specialists have special interest in or are involved in clinical papers in that area. These are usually the ones that have the knowledge & passion in that particular area.

If your steroid increase & commencing of calcium don’t help go back to that Rheumo and explain that you need more help in controlling your fibromyalgia and write a list of your symptoms in that area to take to them. If they prove to not be that helpful you may need to find a Specialist that will listen to you & give you the appropriate treatment. Fibromyalgia is one of the auto immune diseases that I have & the right dose of steroids usually helps that dramatically, although we are all different & I get Cushing Syndrome if I take them so so cant tolerate them

All the best

Melbourne-Girl

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[Naz2005 in reply to Melbourne-Girl]

Thank you your absolutely right im under rhumi consultants are good but its like they rushed for time x

[Melbourne-Girl in reply to Naz2005]

If your Rheumatologist is good that half the battle. If your next appointment is soon write out a list of things that you need to discuss & if it’s not for ages try & make an appointment earlier. When you see him/her ask if you can go through things at your own pace please as otherwise you get stressed (or however you want to explain that), and forget to discuss important things with him/her. It helps to even write that on the top of what you want to discuss. Explain what happens when you are rushed & note that under your asking to go at your pace, hopefully that will help & having it written down certainly will,

All the best

M.G.xx

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