Hopeful lm not alone

Hi guys. I have been on the medical roundabout for over two years currently. I seem to go from specialist to specialist with a uniformed well we don't seem to find anything conclusive.

My symptoms are the following despite my high medication regime which includes morphin of

No sleep; panic attacks; extreme joint pain; joint swelling; carpal tunnel in both wrists,

My body seems to lock rigid in the morning including my fingers; depression; loss of memory and spontaneous thinking;

New symptom seems to be extreme pain on the soles of my feet which stops me walking; sharp pain in the lower back area the tail bone area takes your breath away and again all this despite taking morphine, and a combination of other drugs..

Does this sound familiar to anyone l think confirmation from other sufferers would if possible go some way to making me feel lm not the only individual suffering from these symptoms.

I find the medical profession to be very dismissive and my quarterly meetings with neurology and rheumatology seem a waste of time has anyone tried alternative suggestions e.g acupuncture.


30 Replies

  • Good morning darling i suffer with burning feet on the soles. My fingers are thick and feel like tree trunks,they lock as wel. I wear fingerless gloves in bed to keep them warm. I have oa/ra fibro and cfs to add to the mix.xxxx

  • Itoo used to go to bed dressed like an ice hockey player at times - supports on wrists,knees,elbows,ankles and sometimes my shoulder. I may have looked daft,but it kept me warm and I could move in the mornings without crying or cracking when I moved,so definitely worth it x

  • Morning - your story sounds increasingly similar to how mine was/is. I had three back ops(interbody fusion L4/5,revision with screw and bone graft replacement 5 months later,and then decompression surgery 2 1/2 yrs after that - all in it was 3 years to the day and I'd had three major back surgeries from the age of 37. My body responded extremely well to the recovery process,and I and my Physio/consultant put that down to the fact I was very fit before all my ops. This however changed just 4/5 months after the last,I found I could do a gym class and not get out of breath,but then trying to get showered and dressed would absolutely knock me for 6. It slowly got to the point where I had to give the gym up as my joints became so swollen that I looked like another person from the waist down,and I had to crawl up the stairs on all 4's just to be in less pain. I'd been to the gps several time over the course of 7 months,with bloods being taken every time,and all I got told was it's a bug or virus that hasn't shown up and should just go away - at one point the GP had obviously run out of ideas as he wrote a referral back to my back surgeon - this was the point when I lost all faith and patience with him...., how the hell could my elbows,forearms,wrists and hands have anything to do with my back?this was when I found the power for the first time in my life to stand upto the GP and told him he was talking rubbish,and I wanted a second opinion - within a week I saw another GP who took one look at me and said I needed to see a rheumatologist,and the rest as they say,is history 😜 I knew my body and I'd never suffered any of these symptoms before - my family couldn't believe the pain I was in(I remember lying in bed crying one morning because I never realised toes could hurt in such places,especially when I hadn't even made it out of bed!). I was currently on diclofenac,oxynorm and oxycontin(to help me try and sleep through the night as I used to wake when my next dose was due otherwise) diazepam and also amiltryptline for the nerve damage in my legs..... along with citalopram for the depression my stress at work had caused - how was anyone meant to be in pain on that lot? But there I was on a daily basis crying in pain and gradually increasing the dosage too. My meds have since been changed to include gabapentin again,lanzaporole for my stomach,enbrel injections,and also hapoctasin morphine patches(52.5mcg). I found that the whole way through my journey(just over 2 years since diagnosis) that the same consultant I saw with my private healthcare from work has completely changed his attitude since I've been on his NHS list,and instead of talking to me,used to talk over me,or just ignore any questions I asked - it got to the point where the only way my treatment seemed to move along in a hurry was after seeing the clinical nurse - these guys are well understated in their fantastic roles,and as far as my story is concerned,far more helpful than the consultant - she did more for me in one 1 HR appointment than any of the previous years consultants appointments!! Even the district nurse couldn't believe enbrel had only been suggested in late oct,but she was in my home demonstrating the pens at the start of Jan - I guess I was lucky on that one.

    Since having to give the gym up(I'm very hopeful of being able to start aqua in the near future,as this keeps my back healthy) my back health has suffered immensely,and I also get out of breath just doing the simplest of things,like walking up the stairs or climbing in and out of the bath,plus I'm constantly cold,regardless of the constant high doses of medication,and now the weathers gotten damper,I'm finding I hurt in places for the first time in months. I also have to take my meds,then usually wait until they kick in before I can move comfortably,but like you,I also forget what I'm saying halfway through a word or sentence,and as for thinking on my feet,that is very rare nowadays 😢

    You are definitely not alone with your symptoms,or experience of specialists,but I would say to persevere,learn to say no if you feel they're being dismissive - you'll be amazed at how pleased you'll feel with yourself for not being fobbed off again,after all,YOU know your body better than anyone,and just keep on at them - it was my helpful GP that got me my nurse appointment,so maybe try that route and see if you find that experience more pleasant and useful.

    I hope I've been of some use to you,I'd hate to think you were alone,I used to feel like that and it's an awful feeling,so even if you just read through posts on here,or do what you've done and ask,you'll realise that your journey is not one of lonesome,but one we have all taken many times.

    Fingers crossed you get sorted soon

    Take care of yourself


  • Thank you x

  • Thank you NIcki thru tears at 2 o'clock in the morning whilst lm wondering whether my bag of pills would be enough

  • Please please get back onto your medical team,and if you find you can't,do you have a close family member or friend that could speak to them on your behalf? There's no way that 2 months down the line you should still be feeling like this - if any of them have a conscious then something will get done for you,but please don't continue to suffer alone ,there is help available,and once you find a sympathetic nurse(there are so many wonderful ones out there) then that will be half your battle fought for you,and you will find some peace just in having someone fight your corner for you. And if you're still getting fobbed off by the gp,have you thought about an official complaint? A lot of the time just the threat of a complaint is all that's needed. It's amazing how quickly people pull their finger out if they know you're not just going to put up with their nonsense !! Please don't lose hope,there are many good people willing to help,sometimes you just need to dig a bit deeper to find them in your area(actually,have you tried any therapists or support groups? They'd be a fantastic source of support for you,and obviously everything's confidential or anonymous ).

    Keep strong

    Nicki xx

  • Thank you Nicki I have been feeling like this for nearly a year and 2 years of medical people telling me that they don't have enough information and to hang tight it will be fine and I seem to have come to the end of that piece of string have an appointment with my GP today and will try your approach.

  • Please don't leave that Drs room until you've let everything out about how you feel - don't give in to them trying to rush you out of the door because it doesn't fit with their 5/10 minute rule - it's your appointment and make sure you tell them exactly how you've been left to feel after what feels like being lost in the system. As someone else said on here the other day,unfortunately we live with a system nowadays where you get lost because of the huge numbers going through,unless you're prepared to shout the loudest,and in your case I feel that's pretty much all you've got left if youve tried all other avenues. Demand to be referred to counselling at the very least,and at best let's hope they may even start afresh so it can give them a new set of eyes across your history,and hopefully come to somewhere that you will find useful - you have the strength to do this,just don't let them try to bully you into going away as they do with so many others !

    Thinking of you,and hope it goes your way xx

  • Yes I've used acupuncture a lot.

    Have you thought of looking at what you eat? Lots of us also find that changing our eating habits can help. Culprits are often meat, wheat, sugar and dairy, but it varies from person to person. It's something you have to experiment with and find out for yourself what helps.

  • Thank you

  • Let us know if you want more ideas!

  • Please share a

    More the merrier lm fed up with losing control of my body. Anne

  • There was an interesting 'food hospital' programme a few years back on Channel 4 which looked at this and lots of us have found that changing our eating habits can help. Culprits are often meat, wheat, sugar and dairy, but it varies from person to person. Eating less processed foods and more organic is also worth trying.

    It's something you have to experiment with and find out for yourself what helps. It's helped me which is why I suggest it. The first thing I dropped was meat...only meant to do it for 2 weeks to see if it made any difference, and never ate it again and that was in 1982! Sugar also is a problem for me...I vary in how strict I am depending on how my joints are. My wrists swell up within 24 hours if I eat bread and jam as I did recently on a French holiday!

    Are you able to swim? It's a gentle way to keep joints mobile. Have you tried yoga ever? Good for calming the nerves and helps with relaxation....

    And fish oils are the one thing with an evidence base for helping with RA and worth trying. Hope some of this helps!

  • Thank you

  • Hiya Anne & welcome. Unusually for me I'm starting off by asking you a question. What is it you think you may have? My take on reading your post is you're on pretty hefty meds, what have they each been prescribed for? If you can determine each symptom & the med prescribed for it things may become clearer. The thing is one or other may be reducing inflammation & so could influence examination or blood tests negatively so I fear the difficulty in you receiving a firm diagnosis is being undermined by the meds themselves. Your pain could be caused by any number of conditions but to still have pain in spite of being on morphine would indicate that the root cause isn't being treated. For example, amongst other meds I'm prescribed buprenorphine for OA pain but it was only prescribed once it was determined the pain was due to OA & not RD. I hope you don't mind be replying with questions!

  • Query Ms is what it says on my paperwork

  • Ok, then maybe in the first instance you'd be better asking your questions on the HU MS site. Hopefully they'll be able to shed some light?

  • Acupuncture has really worked for me, especially in my feet (both soles and areas around toes) and my hands (especially wrist area). I had 1 session a week for 6 weeks and now have 1 session a month. It does not work for everyone but I'm VERY glad I gave it a go.

  • Thank you x

  • Have you checked your thyroids (don't accept Normal bloods)

    Have you checked B12 Deficiency (again don't accept normal)

    For Depression, loss of memory (hopefully not on a statin) joint pain carpal tunnel consider both B12 Def and low thyroid.

    Also lower back, tailbone pain and stiffness and when getting up out of bed and chairs can be down to vitamin D deficiency.

    Many of these illness 'can' go hand in hand. Especially for one in ten women over a certain age :)

    Just thoughts Anne51

  • Thank you las your advice that l request these tests or that l take supplements?

  • Vitamin D3 5000iu got rid of my tailbone pain, lower back pain, hip, leg pains, stiffness etc., almost over night. Only when I forget to take my D3 does it all come back later that same day.

    vitamindcouncil.com for safe up to date doses of vitamin D3 and to see the many symptoms and illnesses vitamin D3 can help.

  • Ok did you go to gp with this ailment or am l going to laughed out of the surgery

  • Lol! No Tailbone pain (pain of the coccyx) is actually a condition, I remember my my Doctor saying there are two types of tailbone pain and because I said I needed to moved from cheek to cheek to relieve the pain Dr was able to diagnose it as tailbone pain.

    My Doctor then told me there was no cure for tailbone pain. :) :)

  • Idea only - Ask your Doctor for these thyroid panel bloods to get a full picture. (You might not be offered them all.) These are the bloods advised on the Thyroid Uk website. If you do get any bloods done - idea only - many now ask for a print out of their blood results and their ranges (to keep for their own records) and also post them up on Thyroid Uk forum on here for others to help them forward. Remember not to accept that your thyroid/vitamin B12 bloods are 'Normal' Check it out yourself, too many have been overlooked or missed and left suffering.

    There is a website over in America called STTM - Stop The Thyroid Madness- The title says it all, too many are having to fight to get their illness acknowledged.

    TSH = Thyroid Stimulating Hormone

    FT4 = Free T4

    FT3 = FreeT3

    TPO = Thyroid Peroxidase

    TgAb - Thyroglobulin

    Vitamin B12

    Vitamin D


    Ferritin = stored iron


  • Welcome Anne, to the board none of us want to be a member of, but one that we are all grateful to have available. This is a wonderful group as I'm sure you've seen from all of the lovely responses.

  • Thank you

  • That is just so frustrating and depressing. I cannot believe how dismissive some GPs and consultants can be. We do have to learn to be assertive sometimes (it took me a very long time)

    I feel very lucky that for the most part I've had excellent doctors. I know I can phone my rheumatology department if I have a problem and as often as not my consultant will call me back within 24hrs with advice. (I am careful not to take advantage and only call in extreme situations! ) Having lived with RA for 40yrs he always respects the fact that I do by now know my body and my ra reasonably well, while I respect and trust his medical expertise and judgement - the feeling is that it is a joint (ha- no pun intended!) effort, which is as it should be.

    My most irritating gp was one who, no matter what I had attended the surgery for, firstly looked at my age then gave his idea of a likely cause of my problem. "I think at your age it's most likely due to the menopause". 😉!!!

    I do hope you get some resolution soon (I have no idea of your age Anne, but don't let them tell you its the menopause😉)

  • Oh no... Menopause?? That's rather... ummm... sexist isn't it? I wonder - do they look at men at a certain age and say... "Gee, I think it must just be low testosterone.."? I hope not any way... I trust my doc too - to the nth degree - and we have the same relationship. I almost never call for an urgent situation (maybe once every 10 years or so..), but when I do, I usually get a call back, as you said, within 24 hours.

    Wow - RA for 40 years.. I would for sure think you do know your body by now..

  • Thank you l appreciate that you took the time to respond to me. 51 years old Anne x

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