I joined this group as I have recently been diagnosed! I thought I’d share my life so far.
I’m 26 and I’ve been suffering with fibromyalgia now for a couple of years. After me pushing back for number of years that the swelling around my knees, elbows and hands they have came to diagnosis of lymphoma as well.
I have started using the compression leggings however I can’t get use to them, I will keep trying! And I’ve been given gloves but I find they make my hands throb is this normal?
I’m feeling fed up lately as I don’t remember the last time I wasn’t swollen, I’m sick of feeling ugly and I’m sick of my clothes not fitting. I am classed as over weight and I have tried to lose it but because I’m swollen and in pain. 24.7 you can imagine that it is very difficult to lose weight.
It has been massively hard to get family and friends to understand I’m not lazy, I still work full time for the NHS and it is very difficult at times to even get out of bed!
I’m always tired, I’m always itchy or in pain or swollen and I am also in the fibromyalgia group on this site so I thought joining this group would make me feel better also!
Thanks for reading, sorry for the long post 🫶🏻
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Dash01
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Can understand all of your feelings and frustration!! At 26 years old it must be a struggle to stop yourself getting depressed and in a hole! Well done on still going to work despite the struggle. I often find myself wondering is it my diet, processed food, something in the water???
I look at other civilisations like Malaysia and Japan and those countries dont seem to have the same health problems as western civilisations and the more I think about it the more I want to look into it…
At 64 years old and retired through ill health I think I’m more resigned to the fact that ‘this is my life now’ ☹️
If you haven't already done so have a look at the website of the Lymphoedema Support Network lymphoedema.org . Also they have a telephone helpline and details are on their website. In your post it look like predictive text has stepped in and changed your reference to Lymphoedema.
My Lymphoedema is below knee in both kegs and compression garments are my friend although I have a love hate relationship with them. I only getting throbbing occasionally but there is an impact on what I can wear (or choose to wear) and buying shoes is a nightmare. However I have had it since childhood.
In recent years I have gone to a private Manual Lymphatic Drainage (MLD) therapist. It's hard to say what difference she makes but as I am now retirement age I wanted to do all I can to manage my Lymphoedema, for the future. She is excellent, full of knowledge and I really enjoy my sessions. The LSN have details of MLD therapists.
Swimming/ aqua aerobics is excellent exercise for Lymphoedema.
You might try suggesting friends and family look at the LSN website.
Good luck and I wish you all the best managing your Lymphoedema. It's early days x
Getting used to wearing compression garments can take a while. Also getting the correct ones, which are both comfortable and effective, can take quite a lot of trial and error. It's worth persevering as compression is generally the best way of stopping the swelling getting worse.
Assuming your compression was prescribed (ideally at a lymphoedema clinic?) I suggest contacting them asap to discuss the difficulties you are experiencing. It's possible the gloves are too tight if they're making your hands throb.
Hi Dasho,im so sorry that at your young age youre struggling with fibromyalgia and lymphodema. I have M.E which is very similar to fibromyalgia,and I have arthritis in my hands,and I have found it impossible ( after a long struggle) to get compression garments onto my lymphy legs.
Clinic suggested using the “not made to measure “ stockings. Theyre certainly easier to get on and off,but dont do the same job. The clinic said theyre “ better than nothing” so I stick with them,but I make sure I follow videos on youtube showing how to do self manual drainage
I take care of my legs to keep the skin as soft and healthy as I can, by using a good moisturiser twice a day,and adding a few drops of essential oils such as lavender or tea tree ( good antibacterials and anti inflammatories )
I try to keep to a healthy diet,and I include a little pineapple each day,as it contains an enzyme called bromelain,which is said to be good for helping move lymph fluid.
Supplements like below are good for elevating lymph function..
cleavers/ burdock root/ red root/ dandelion/ echinacea/ goodenseal. I take a daily supplement called Lymph MD which contains most of the above.
I try to be as active as possible but ME limits my energy levels and arthritis does too,and Im sure that sadly with fibromyalgia,you too are limited. But try to move little and often,it all helps. I have a rebounder and i just walk on it,just a few minutes at a time,and a vibroplate.
I have found that clinic has little to offer apart from stockings,so I research things for myself.
I’m so sorry you are not well. I hate to see young people suffer health problems,seems so unfair not to be able to fully enjoy your young life. XX
So sorry I didn’t reply and it’s been so long!! I appreciate you all taking the time to write to me.
Still suffering to be honest with you. I have given up with the leggings as they make me feel uncomfortable and hot!
I suffer with depression and had a break down about three years ago - i have been very stable for the last three years. I get very exhausted and there are times where I just don’t wanna get up but my job keeps me going, I’d be lost without out.
I’m currently up and wide awake it’s 3am because I’m in so much pain and I get like a flare up like I’ve been sunburnt because there is no more room for swelling so painful.
I’m going to a pain management course so I’m hoping that would help!
I'm sorry you're still suffering. Hopefully the pain management course will be a way forward.
Have you had any help from a lymphoedema specialist? If not ask your GP for a referral to a lymphoedema clinic.
An article from the mediuk website that may be of interest is about diet e.g. dietary changes may help pain and discomfort: mediuk.co.uk/shop/healthy-l...
The only input I’ve had is a lymphoedema nurse ring me about compression leggings, other than that I’ve had no input or advice, I will definitely will be going back to my GP as I can’t carry on with this burning sensation
Hi Dash01,I hope your GP can help. If you encounter difficulties I suggest contacting (call or email) the LSN for guidance about accessing lymphoedema services.
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