Hello, Im new to ssite from Uk.I really need advice, help and support. Ive been chronic now since Christmas. Being passed from one Dr to another. All tests are negative - bloods MRI etc. Last ones EMG at end of month.Seems like since it is not MS im sort of left out to dry( like im unimportant - not an interesting case). Now the most stupid neurologist has referred me to dermatologist lol! In UK derma is just that skin complaints. She didnt even look at my sunburnt swollen legs or listen to my symptoms. Now they want me to see mental health team cos i mentioned the S word = suicidal... that was a figure of speech to explain the pain was killing me.I am not depressed in the sense of depression, i am anxious and angry and frustrated at the ineptness of UK health care.I am so bad now i am getting internal tremors as well as twitches. My life has just been stolen overnight! Occupational therapist(lovely lady) has given me sticks and some aids to help(shower step, stool, bath board, wedge for bed, frame to keep bedclothes off me ).. Im really disabled... how can this be?
I also present the erythromelalgia symptoms - red extremities, swollen, pain,bulging veins, intolerant to heat etc....Im getting flares up random during day every day and especially at night. Desperately trying to get to see EM specialist (only 3 in entire Uk ).
To be struck down(sorry thats how i feel), with double whammy is just unfathomable to me... Why? Emotional trauma/stress of which ive had dreadful amount last few years. I just need to be diagnosed. Im frightened. Im in agony. Im wiildly trawling the blogs grasping any ray of hope re:: aspirin or apple cider vinegar etc... I can.
Please tell me that my symptoms are 'normal' for FM and EM. Im getting such dreadful internal tremors - especially when at rest, my face feels strange, lose sensation /feeling in my hands, feet etc, all my limbs and joints feel swollen ( my knee is), my legs have been double sized for 4 months - they get even bigger at night, im exhausted but dont sleep. This is such a dreadful illness.
Any advice on how to manage symptoms and meds to take welcomed. Sorry to moan. Again, thats not me.. i feel i dont even trecognise myself anymore. How did you get diagnosed- what field of medicine? Im Uk. The more i argue with Drs the more 'hysterical' they label me... Im far from a push over but im feeling so ill and weak im losing the will to argue and battle with them
Hard to type or think so apologies for grammer and flow of message.
Welcome to the site. You have to go back to docs and ask to be referred to Rheumatologist if you have not already seen on as this is who deals with Fibro in U.K. I live in Scotland, where do you stay.
It has taken me 5 years to get a diagnosis. It is awful for you going through all this but you have to keep pestering them. It is good that you have contact with a helpful occupational therapist. Try not to get emotional when talking to docs as they then label you with depression. Make a list of all your symptoms and take it with you to the doctors. It is sometimes helpful to take friend or relative with you for emotional support.
Hi, i live east anglia norfolk. Ive seen rhuemo. As i didnt have that she dismissed me when bloods/xrays negative. I have got very tearful - super emotional i realise that but thats due to fear... its just too much. I think i have severe case as i just cant move. Im use to chronic pain as i have suffered with it since having breast cancer and radiotherapy damage 8 years ago. This - ive never experienced anything like it! the aching, tremors, swelling, fogged head, twitches. Plus ive now presented EM with dreadful red swelling feet/hands - numbness and even my face affected. Will a vascular specialist hold much hope? thats all i have a ref to vascular to pin hopes on.Dr seem to be passing me round like an unwanted gift. Neuro diudnt even examine me - my legs are like sun tanned from FM and swollen. She just stuck pins in feet , which i couldnt feel and a vibrating tool , also couldnt feel. I told her i couldnt. I can hardly walk. I random lose all feeling. What can i do to help myself now? ive trawlled all the sites and blogs and just dont know what to do or take for best. Vitamins? Meds? My Gp is great but hands are tied since ref to hospital.
Thank you so much for replying - i really appreciate it
I’m Bev and I live in the uk. I’ve had fm & CFS for 4 years and was diagnosed by a rheumatologist and was referred to a pain specialist.
I too regularly suffer with internal tremors, burning muscles and joints, and everyday feel like I’ve been hit by a baseball bat all over - literally (head, jaw, neck, shoulders, back, ribs - so it’s painful to breath, arms, hands, hips, knees and ankles.
My chronic fatigue is horrendous and I have so little energy that most days are spent in bed.
I too was struck literally overnight, and sadly never managed to return to work.
1 specialist I saw after going through my medical history said that I had probably been suffering with fm since my 20’s but after a set of both emotional and physical traumas it got hold of me.
I don’t want to sound negative as I realise you are suffering badly right now but by joining this you are sure of advice and support, which hopefully will help you.
I have been on many different meds, some which really didn’t suit me but obviously suit others, it literally is a process of trial and error with hopefully a supportive Gp.
Fm in its nature is a depressing condition - chronic persistent pain causes depression, I am so sorry you are currently not getting the support you need from the medical profession when you need it most.
Dearest Bev, thank you so much for reply. Just to know im not alone and not going mad is a great comfort. Like you my days are mostly spent in bed with such chronic fatigue i can hardly lift head off pillow, struck overnight and not able to work. Feel like ive lost everything. I just dont understand why a rhemo and neuro have been so dismissive. Im under pain clinic and on various meds but these are meds from pre FM /EM that i take for chronic pain due to damage from cancer 8 years ago. I know what pain is but this..... well you know. we all do on this site. My pain specialist was seen just as i was struck down. He saw the swelling, sensitivity to even lightest touch and advised symptomatic treatment but no diagnosis. GP then referred me - and its been downhill since. GP is fantastic but as i said fighting a losing battle with specialists. Im not strong enough bev to keep arguing my case. Hearing your story i realise thart my 4 months are nothing when others have been trying to get answers for years. The vascular in may is Gp attempt to get me help somehow. I know i can ask for 2nd opinion down the line but until EMG nerve conduction on 30th . Everyone( hospital) saying to have the emg first to see but my symptoms are so clear cut. I have it all over like you. I cant have heat to help even as it exacerbates the EM. Im in a real state. Its the tremors and facial numbness that frighten me. You are the first person thus far to also get internal tremors. Mine can last for 3 hours sometimes- other times 10-20 mins. I get them randomly everyday but worse at night.How do you cope bev?
In UK no way will a dermatologist diagnose FM/EM ...!
Im so sorry you have this awful condition. 4 years probably more.. oh bev bless you.
Im sure mine is also due to emotional/physical trauma.
Thank you for giving me the strength and courage to get through tomorrow
I would go back to doctor and ask to be referred to other Rheumy and other Neuro, it does not seem fair that you are in this position. The fiibro and rrst rheumatologist I seen was also very unhelpful told me I had post viral reactive arthritis and it would get better on its own. from then on every doc I seen just kept telling me that I had to give it time. It was only when I saw ENT for unrelated problem which he dealt with he then suggested that other symptoms were more probably Fibro and referred me back to Rheumy, fortunately I am seeing excellent rheumy who dx on first visit to her.. On the negative side I have now developed Trigeminal Neuralgia, but the Neuro I saw was very thorough and again dx on first visit. has arranged 3D scan to determine best treatment for this. Therefore I would see dermatologist as suggested, you never know the more input you have the better. It can't do any harm.
Due to your prvious health problems, were you seen by McMillan nurses. If so you could contact them as they deal with not only people who have cancer but people who are cancer survivors. They are very good at giving support and arranging for further interventions if necessary.