Feelings of defeat

Good morning all,

I've been on here in the past. When I made my profile I didn't know this was primarily for the British Until it was brought to my attention. I have looked for support forums here in the state but I have had no luck. You people on this site are generally caring good people. There is a proactive approach you all give each other that I couldn't find in any site U.S. based. So here I am asking to be excepted and looking for advice.

I have been diagnosed with AS over ten years ago with imflamed bowl disease. My old rhuemy started biologics and anti inflammatories. I tried Enbrel first with great results was in remission for a year before my lymph node in my neck swelled up to the size on a golf ball. I had surgery to remove it and had to stop the Enbrel to solve the problem. Then we tried Humira for a year and a half with no luck. So my rheumatologist decide to give the Enbrel another shot just at a lower dose. Everything was going great until the Enbrel started a severe inflammation of my inflamed bowel disease which went away once I stop. So the last option was to go through pain management. Everything at this time was relatively quiet until a bad flare up that has not let up from the last 3 years. During the last 2 years I have had over 18 epidural shots and 5 nerve ablations in my sacral and my back. I fired my rheumatologist because of the lack of treatment and results. During this time I was complaining about my feet and hands turning purple accompanied by tingling and burning sensation. On top of that i developed dry eyes and mouth. I lost vision in my left eye due to it. My new rhuemy has started me on remicade infusions at 8 viles. On top of the AS and IBD she has diagnosed me with Sjogrens and Scleroderma. I fear that things are going bad as within the last six months my whole extremities turn purple and cold, which my rheumatologist said could be circulatory caused the scleroderma. The remicade has helped a bit but I still am very crippled. We are discussing adding MTX and have to get a bunch of testing done to make sure my IBD and liver can handle it. With the progression that has taken place in the last couple years I feel as if the end is drawing near. My mind is strong but my body is telling me different.

My family is been extremely supportive but I have not told them of the new diagnoses and what my body is telling me. I feel as if it will be easier if they don't know so there is less of a pitty party. I posted a while back because my parent and other family members did not seem to understand that i could not do things because of my condition. All of your advise was very helpful and it did work. The everyday struggles have got the best of me now. Is there anything else that can be done?

7 Replies

  • Gosh what an awful lot you have to contend with on the autoimmune front. I can at least understand mixtures of connective tissue disease because I also have quite a lot of bits and bobs going on - but nothing of the severity of yours I'm very thankful to say.

    I don't know if you are aware that there is a health unlocked community for Raynaud's & Scleroderma too but I am a member of this and also of Lupus UK and Thyroid UK. I think Scleroderma sufferers would be well placed to give you advice on managing this disease day to day.

    For myself I use all these communities sometimes because I never quite seem to fit any one community - despite having confirmed diagnosises of RA and Hashmito;s and also of immune mediated small fiber neuropathy plus mild secondary Raynauds and Sjogrens. Unlike yourself I feel that many of my symptoms are at the mild end of each of these conditions or diseases apart from the neuropathy - which is quite disabling and very painful 24/7.

    However having a mix of connective tissue diseases, even mildly, does make life lonelier where friends and family are concerned. I wish you felt you could share all of this with them too so that they can understand and learn more. I think this might help but understand you dread their pity. But I think you need to overcome this because they would hate not to be there for you when you need them I'm sure.

    I'm afraid I just don't know enough about the US and how the health system works apart from that it's tied in with insurance. But can you access counselling or a psychotherapist at all so that you can talk things through with someone in person? I hate the idea of you feeling this isolated and depressed.

    I know there's a good patient led community in the US called Creaky Joints which is there for people with all types of inflammatory Arthritis. I'm not sure if they have a helpline though - but they may well do and I've met the organisors and they were really warm people.

    Sorry not to be of much help with practical suggests but I'm here for you in spirit on the other side of the Atlantic at least and I do also know what these diseases are and how terribly difficult it can be to live with them.

    I don't think the geographical separation makes much difference with cyber communities anyway. I also use Sjogren's World and NeuroTalk which are both international communities - mainly used by people in Canada and the USA. They have supported and helped me a lot and the relative anonymity is refreshing sometimes too.

    Twitchy x

  • There are quite a few people that use this site from other parts of the world so you are most welcome to be here and talk and receive encouragement, I second twitchy toes on the other forums within hu, they can be as helpful.

    Although we all have different forms of this disease whether you live in the uk or the moon we are in the same boat. Need the same encouragement and need to spill the beans on our worries to be able to fight another day.

    Do welcome and stay, take care. Xx

  • Hi TGilmore,

    Sorry to here that things are so difficult for you at present and do please feel that you have as much right as anyone else to access this site (as Georje says you can come from anywhere in the universe for all we care).

    I've accessed the Creekyjoints site on several occasions and have found it a useful resource running alongside my use of this site and also the Australian HU sjogren's site.

    My experience of immune disorders is limited to RA with probable sjogren's over the past six months so I'll put some things down and maybe something will be of use...

    I have been taking flaxseed supplements in high doses for the past 3 weeks (with ophthalmologist approval/knowledge) and I am beginning to seem some improvement in that I am not using so much artificial tears products and the light sensitivity has settled down slightly (I take 9 X 1000mg tables a day - because of your bowel problems I would get advice first and be prepared to start low and steadily build up as high doses can cause diahrea (spelt wrong) in some people). I also take two turmeric capsules a day as they were recommended by doctor who said 'if you are going to take supplements be sure that turmeric is the one you take' apparently it has good anti inflammatory properties.

    Re circulation my physiology suggested that I used a rolling pin to massage my feet by sitting down and placing my feet firmly on the rolling pin and push it forward and backwards to massage the soles of my feet. I was also advised to keep a pot of playdough in the fridge and take it out and 'play' using kneeling and rolling skills to stimulate blood flow and strengthen my fingers (it's very therapeutic and I find it quite relaxing).

    Re pain management try looking up a theory called The pain gate theory which explains how how pain receptors can sometimes be 'closed down' or at lease 'less open' by alternative stimuli.... Sorry this part is new to me so I cannot explain a lot as I am still looking into this and how it might be of use to me.

    I used the American Arthritis foundation's on line 'Living with arthritis' workshop run by Stamford university (it was a 6 week 'closed' workshop and I got a lot from it - I mean have got the exact title wrong!).

    On the emotional side I second Twitchytoes recommendation of accessing some kind of counselling support - I have definitely found it useful and a positive part of my treatment and condition maintain ace program. It is important to talk frankly with someone on a regular basis if you are to not feel isolated and 'down' about your current situation.... I find mindfulness meditation very helpful and would recommend finding a local group or teacher failing that an online recording or app might suffice to start with... I use an app called Buddify and someone on here recommended a web page called '1 minute mediation' (I think that's what it is called) which has a lovely short video mediation clip.

    Like I say hopefully there is a nugget of useful info in there.

    Al the best


    P.S. Do let us know how you are doing over the coming weeks/months as there are many who will do their level best to support you and there will be plenty of experience you can offer from which we can learn from. :)

  • Hello. I'm from Canada and also use this site. I find there is not another quite like it as far as mature, caring, insightful, experienced and humane science based information.

    As much as doctors know about these diseases there is s lack of support in many countries. My rheumy and GP have very limited knowledge about support groups. I had to find it in my own and it took many a year. I found a support group at my local public library with a group called Take Charge. It's a group that meets once s week and we discuss chronic pain management and everything else we want to discuss.

    I find it helpfull to meet strangers who have common health issues as they don't judge and have the pity factor you mentioned.

    Often family members do not fully understand because they do not feel what we feel, and our condition is invisible, they can not see our pain like we feel it. So talking to others with the same condition makes us feel accepted and most importantly understood. This one hour once a week has changed my feeling of hopelessness to one of hope. It's helps me feel like I'm not alone in this world stuffing something no one understands. I love my family and my BF and they support me best they can and I also do not want to overburden them with complaints and such.

    Just from listening to your post, I can understand how overwhelmed you are feeling. Sending virtual gentle hugs! I'm not familiar with what programs the USA has but if your doctors can not point you towards a support group you may have to investigate your community to see what's out there. I was pretty baffled that my own docs did not know about the Take Charge support groups run out of public libraries.

    You will find this site a supportive caring community.

  • Hello Welcome to our site

    With regards with your condition, sometimes some radical look at the medications you take on a daily basis. This may be of some help to you.

    I see you have had various operations to your spine, in the UK the more they go in the more damage they can do, sometimes nerves become trapped and veins and arteries sometime become nipped this can reduce bloods to your extremities especially if they have worked at the lower regions of the spine next to the hip the area from hip to leg has a great deal of traffic so things can become trapped or nipped

    Sometimes in the spine when you have had the work done in the areas of spine and disk rough areas can also effect the nerves that run down the spine, through hip by the sciatic nerve

    i suppose when you think about it when everything runs down through the spine things can rub or areas in the spine could be restricting blood supplies to extremities. Suppression of nerve pain can be suppressed by medications. used for those with depression.

    You say that you have been to Pain Management, what have they advised to suppress pain as they could suggest Tens nerve blocks, that may assist with pain suppression. As they can also give you relaxation techniques

    Sad to say I am no doctor so I can suggest only you look into little things to give relief as little things can add up and help you.

    Personally I know little of your additional complaints other than RA, all I would say is it looks like damage caused. under the knife possibly it may be a good thing to check the blood supplies and some Nuro testing could also be some way forward this may be able to work out connectivity of your nerves in lower areas.

    Sorry I am not much help all i can suggest is be proactive in your demands


  • There is definitely a great support group for AS in the states - the Spondylitis Association of America, and also kickAS - just google "ankylosing spondylitis forum" and both of them should come up. Of course you are always welcome to stay with us here, but if you want support and really helpful information from a much bigger forum of folk all with spondyloarthritis, then you can't get better than either (or both) of those forums, and you can also join the SAA and get a magazine and access to various seminars and groups.

  • Have you checked out the site rheumatoidarthritisguy.com. It is quite a fun site based in America and has photos and a forum of other RA sufferers.

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