I was diagnosed with fibro about 8 years ago. I have experienced an increasing build up of symptoms since,most recently non-injury ankle tendonitis and other unexplained symptoms that are under investigation. Due to leg pain,feet and ankle pain, I now have difficulty walking on 2 crutches. I am in constant pain and suffer extreme fatigue to name but a few. I have always been positive and hopeful but this has been challenged a great deal, especially in the past six months as I have been at my worst.
Best wishes to you all x
Written by
Tillyray
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Welcome to our wonderful forum I am so sorry that you have had Fibro for so long. I personally have had to live with it, plus other conditions for over 30 years. It is not an easy condition to have.
You might like to have a look at our mother site for more information on Fibro fmauk.org
Please forgive me if I am stating any of the obvious here.
Firstly, make an appointment to see your GP and ask him or her to review your meds. You need to tell them that you are still in a lot of pain and have a chat about what different meds you could try.
Secondly have you been to a Pain Management Clinic? The Clinics run a course of around 6 sessions and include all sorts of things to help you manage your Fibro. Try to get a referral sooner rather than later, as there is often a waiting list.
In one way the fatigue is the worst part I guess. At least with pain there are medications that we can try, although it does take a lot of trial and error.
With fatigue there is no medication. That's why I have suggested the Pain Management Clinic. Whilst you are with your GP you could ask if there is also a Chronic Fatigue Clinic that you could attend.
It is quite confusing that there are Pain Clinics. They help with medications and Pain Management Clinics that help with dealing with the pain and fatigue.
With fatigue it is all about pacing yourself. This is something that many of us struggle with. It is so tempting on a decent day to do too much, and then end up paying for it the next day.
I do hope that some of this helps and I look forward to chatting to you again.
I'm sorry to hear you have been ill for so long. I also have other conditions to live with which can always make the fibro act up. Due to recent deterioration in my health, I have had my meds reviewed, as in the last 6 months after ankle tendonitis I've had constant feet pain and sensations of numbness,fizzing etc. My feet feel like jelly with pain and I still also feel the crushing ankle pain. Adding that to my already painful lead-legs of ten years when standing or walking,and other unexplained symptoms that no one seems sure is fibro or not, it isn't getting any easier. With my good doctors help I got a refferal to a Lupus and vasculitis centre for tests and I am hoping at some point in the near future to receive answers. The consultant there suggested a pain clinic to me and I am awaiting the appointment. I find I can now suffer with fatigue by just being awake which doesn't make for exciting company.
I hope you have had a good day and I wish you another good one tomorrow.
Welcome to our forum Tillyray and thank you for sharing your story. I am sorry to read that you are having increasing problems it is so difficult with fibro mimicking so many other illnesses to know whether it is the fibro or something else that is causing your problems so I presume that is why theyt are investigating further.
Many people on the forum including myself seem to ahve multiple health problems and I can honestly say I never know whether a new symptom is something new or a result of my fibro and osteo arthritis. Recently I will start out somewhere walking reasonably well and suddenly have shooting pains across my foot and ankle and yesterday I literally had them start from my foot right up my leg and through to my upper body I must admit it stopped me in my tracks for about 10 minutes. It is often the unexpected severity of a symptom that causes us problems. It must be very difficult for you having to walk on crutches and that could be adding to your fatigue.
Have you had a look at our mother site Fibromyalgia Action UK just in case there is any new information on treatments or meds that might help you?. If you have any specific questions I am sure there will be someone out there who has had the same experience. Look forward to your future posts.x
Hi rose wine and thank you for your reply. I too have other health problems and when I am struggling with those, the fibro is also always at its worse. I have had unexplained symptoms for several years and due to my deterioration and persistence to find answers with the help of my good GP, I am having further tests at a specialist clinic for vasculitis and Lupus.It is slow going but hopefully the outcome will bring some answers, and from that some treatment. I am on meds and pain relief which has gone up lately.I have suffered with constant feet pain and various sensations in both feet and ankle pain since the ankle tendonitis 6 months ago,my feet feel like jelly with pain and feel numb/fizzy/fuzzy on the ground.This adds to the heavy lead-legs I already had when standing or walking, hence the need for 2 crutches. I am also more often than not, wiped out from just being awake.
I hope you are OK today and that you also have a good day tomorrow.Thank you for your support.
Numb/fizzy/fuzzy on the ground is actually such a good description of the feeling. If I stand up I often feel I am not feeling the back of my feet from about half way down and it makes me stagger or I have the feeling I am going to topple over. It doesn't happen all the time so it tends to catch me rather unprepared. I have found that my legs seem a bit lighter and less tense since I have done stretching exercises twice a day and massaging with Musselflex gel.
Strange you mentioning Lupus as quite a few people on the site have that as well as fibro. Do hope you can get some answers. I am having a restful day today. Hope you can gets some answers and then hopefully some treatment that helps.x
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.
Thank you so much for telling us about yourself it is genuinely appreciated. I have had Fibro for about 4 years and I have several other medical conditions such as Arthritis, Asthma, COPD, Migraines, Spondylosis, A Diviculum in my stomach, no Coccyx, etc, etc, so I do struggle on a daily basis. One thing that I have noticed since my Fibro diagnosis is that I have developed a great deal of allergies?
I want to genuinely and sincerely wish you all the best of luck, and please take care of yourself.
Hi Ken.Thank you so much for the welcome and your kind words of support, I truly appreciate it.
I suffer with a variety of symptoms that I am told, may all be, or may not be related to my diagnosis of fibromyalgia. New symptoms once again being investigated,this time at a Lupus/vasculitis clinic. I also have kidney problems (which have long been monitored as it may be or may not be due to iga nephropathy) IBS, food intolerances, migraine, arthritis,etc etc.
It is very difficult, with everyday being a struggle. Sometimes I am unsure which symptom is causing what? But then it doesn't matter, as before long it all flares up anyway and rolls into one.
I hope you are having a good day today, or at least some good moments that are really fabulous!
Welcome to our wonderful community forum. There is usually someone about day or night to chat too, If you feel the need.
I have met some fabulous friends here, we understand each other's pain and suffering. This community forum is full of compassion and respect for one another! I personally would be so lost with it!
Take care and the very best of luck with your appointment at the pain clinic. Do let us know how you get on!
Hi Elizabeth. Thank you so much for your kind words. It is so nice to hear you've made such good friends.I can understand the camaraderie, as it is difficult for those- who thankfully don't have to live with this- to understand it, with all it brings and it's various symptoms that are here, there, everywhere.
The forums are here for all to be informed(pity some Drs do not read them?)
have a laugh,and know you are not alone.
If you look at the mother site fmauk.org you can be put in touch with meeting up at local support group near where you live and buy Fibro related merchandise . More awareness means eventually better treatment both in medical world and elsewhere we hope.
Keep updating how you get along as another person could read your posts and say'Hey that is just like me and now I have an answer!
I absolutely agree that a lot of Doctors should have more knowledge about fibromyalgia,and what we have to go through and live with. Fortunately I have a good GP who is happy to be directed when her knowledge is lacking, and she has been a great support to me. A lot of the specialists I've seen over the years have been seriously lacking. So I do spread the word!
Hopefully the medical world will catch up with the need for early diagnosis and better treatment, and dare I say.. a cure would be nice too!
The thing is Tillyray the simple fact is Fibro is very personnel .We are a lot different people so a cure is not as possible as say cancer which is cell led.
Encouraging is that other parts of the world are looking at better treatments etc.
hi till your not in your own bab,lve suffered for 11 years now,and you just have to keep going,l never aeem to have any or many food days but its good to hear from others and know your not on your own,van,
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I am so sorry that you have had Fibro for so long. I personally have had to live with it, plus other conditions for over 30 years. It is not an easy condition to have.
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